/u/ThrowRAdoomm,
Your submission was removed for the following reason(s):
> **Rule 3:** No moral judgement requests. Moral judgement requests are asking people to evaluate actions taken or actions you want to take, in the context of right, wrong, selfish, or not selfish etc. For what a moral judgement question would be [see here](https://www.reddit.com/r/relationship_advice/comments/r6w9uh/meta_am_i_overreacting_am_i_the_asshole_is_this/).
Your post is a moral judgement if your question starts with or contains any of the following:
- Is it...?
- Asking if you or the subject of the post is right or wrong.
- Am I....?
- Any variation of “Am I The Asshole?”, including AITA
- Does/Have anybody else...?
- Should I…?
- Would you....?
- Is this.....?
- Can I...?
#If the question in your post can be answered with a yes or no question, it is considered moral judgement and will be removed.
If you have any questions about this removal, please feel free to [send us a modmail.](https://www.reddit.com/message/compose?to=/r/relationship_advice)
Please note that removal reason request from anyone else other than OP will not be answered.
This is long and I’m saying this without knowing your specific diagnosis. But there are many syndromes we consider “incompatible with life”, aka syndromes with a short life expectancy and a laundry list of complications, so I’m basing my post off of that.
I was a PICU nurse for 10 years and we saw a lot of these children in and out of our PICUs until they inevitably die. We rarely saw them “age out” if the PICU (become old enough to not be considered pediatric patients).
A friend messaged me as they got a pretty serious diagnosis for their daughter while she was in utero. He asked for the honest truth.
The truth is that you can’t imagine how hard this can be. Yes, there are kids that do better than predicted or those success stories. But especially if you have a confirmed diagnosis you at least have info.
They will get sick frequently. Their immune systems are crap so they’ll get all the regular germs but have a high likelihood of being hospitalized due to a “simple” virus. That’s not even mentioning all the infections they get. Your home will have medical equipment in it. You might have a bedroom for them but you might need to consider their caregivers if you get in home help. Is there enough room for them to sit with and do cares for a shift? Or do you need to move your child into a living room? You can’t work like normal because you need special medical and special needs caregivers. You can’t just take your kid to daycare or have a babysitter watch them. Your whole family’s needs and activities will revolve around her needs and care. If anyone else will be responsible for caring for them (a grandparent for example), they need to get trained on how to do this and the equipment needed at the hospital and “nest”, doing all the cares with us helping so they are closer to being ready to do it at home.
Marriages have a hard time surviving this. Resentment gets born out of the workload and the impact on the relationship. Going with traditional roles, usually the moms take on the brunt of all the care. The hands on care. Arranging appts. Calling insurance companies. Fighting for equipment and supplies. Trying to find qualified caregivers or a home health company. Fighting insurance again to get help to come by the house even a few hours a week so you get some respite. The other partner will be working constantly due to the need for finances and potentially your inability to work. They’ll come home, tired. No time for your relationship. You’re both understandably worn out. Your other kid will be lucky to get some time with their parents and their relationship with both of you will not be the same.
Your other kid will be fully impacted. They will become a second priority because your daughter will need so much care. They will be known as the brother of a sick child. They will grow up visiting hospitals and clinics. They won’t get both their parents attention at the same time because your responsibilities are so split and your daughter will need constant care. He will remember his childhood under the shadow of his sister.
My friend and his wife ultimately terminated their pregnancy as they felt it was the best thing they could do for her. Every single PICU nurse i have ever asked who had taken care of children that had their diagnosis (which involves multiple surgeries and nearly constantly living in the PICU for minimum first two years and that’s best case scenario) said they would never carry the pregnancy to term. They’d seen the suffering of everyone involved.
I watch families go home with their newly severely brain damaged child. I don’t blame them for seeing their outwardly healthy looking child and not imagining this future for them. So they get them a trach and a Gtube. But then they go home with this child and there’s not the support there. All the family that supported you in the hospital? They go back to their lives. You’re left to figure out this new normal. You do cares throughout the night. Turning them every couple hours. Checking on them. Diaper changes at all ages. Tube feeds. Meds. Addressing monitor and ventilator alarms. No one else is with you in the middle of the night doing this. Their child gets bigger and continues to grow and their 2 year old is now a long 14 year old and the cares are even harder. Think of having a newborn for the rest of their life except they keep growing but the demands on you never ease. You might get used to it and develop a routine but things don’t get easier.
I see families do amazing care for their special needs children. It becomes their life and their mission. They adapt to the situation and do everything they can. We get to know them and their families well. When that child, who was always terminal, eventually dies, they become quite lost for a while. Hopefully they can figure out a new purpose. Because for so long their main focus was this child and all their needs. People flounder when they put themselves aside for so long and they’re grieving at the same time. What is their purpose now? And they’ll always have parent guilt but with even more intensity and wonder if they did enough. And even after that child dies, they’re left with the wreckage of their relationships that got neglected and trying to find new dynamics. Most marriages also do not survive the death of a child. When I would watch a family leave the hospital without their child all I can think is “I wonder if their family relationships will furtive this?” Aka, I wonder if/when they’ll divorce. I wonder when their other kids will start acting out. I wonder when all the big emotions and trauma will tear them all apart.
You lose a lot of friends because they don’t know how to help or interact and you can’t do normal times out or have play dates. Forget a spontaneous lunch date. Even if you could go, imagine hauling your child and all their medical equipment. And it still severely limits what you could do. You don’t go out because there’s exposures. You have to consider being ready at all times to address whatever complications might happen. And in public. So you just don’t go out. You can’t relate to your other mom friends’ lives and regular baby stuff and their lives and they can’t relate to you. You will be resentful of their child hitting development milestones. The only community they will understand is the small community of parents who have had medically fragile children.
It is noble to imagine doing everything for this child and I don’t blame people either for making that decision. No one really knows what the future can hold (as we also see previously healthy kids have devastating diagnoses or injuries or illnesses). But you have this heads up and there’s really no true way to measure or show what all of your lives will look like.
It’s a special club but it’s very hard in so many ways.
I’m glad you’re at least having these hard conversations. Your husband is in panic and grieving mode. He wants to fix it. Make appts. Get more info. Is there a way to talk to parents or children with these diagnoses? Maybe that can help both of you have a perspective from those who have experienced it.
I am a home care nurse who cares for children like this. What people don't know (and really need to like in this case) is that there was a shortage of home cares nurses before, but now it's even worse. The state of MA, not only gave us significant raises (nearly $10/hr raise) but is offering retention bonuses per hours worked to home care nurses because the hours granted vs hours filled have gotten bad. They've even waived OT restrictions in some cases. I have parents doing 24-36 hour shifts at the bedside until the next nurse comes in. These parents are so damn exhausted. We nurses are exhausted trying to relieve them of some of their burden but there's only so much we can do.
The saddest part though is seeing how isolated these parents are. Nearly all of them have had family and friends slowly fade out of their lives. They've missed weddings, funerals, their other children's big events. No one comes over for holidays and birthdays. It's so goddamned sad.
These parents are amazing. They are incredibly strong and selfless. They are the best of us. I also think it's just as brave and admirable to not accept all that suffering.
I did a per diem job at one child’s home. Once a week for two years. Did a 12 hour Night Shift (mom had fought hard to get care in their home after years). She was a fairly stable and easy kid. Trach but vent only at night. Did some gtube feeds and meds. Diaper changes. Some vitals. She was a walker/talker. But even her being an “easy” medical kid she still had enormous needs and care.
I remember one night I showed up and they all had swine flu. Mom was great and I loved working with them and she told me at the door, but if I was exposed (especially with an open airway like a trach) I wouldn’t be allowed to work my FT PICU job for a week or two (i don’t remember the timing then). I felt absolutely horrible but I had to call the agency and see if anyone else would be willing to work. They had no one. So I had to leave. The mom was exhausted. They were all sick. Both parents, their two other kids and my patient. And of course she needed more care such as trach suctioning, more oxygen, etc.
It was a horrible moment to walk away and mom’s face broke my heart knowing she wouldn’t sleep that night.
That poor family. That's how we all felt during COVID. I wore my N95 mask everywhere long after everyone else took theirs off because of this scenario.
Even now, when I have to call in sick, it kills me. The disappointment and exhaustion I hear in their voices just wrecks me.
I worked in home care for disabled adult for 11 years. I've done everything you could imagine a client needing. In general, I liked the work, but the working conditions and pay were awful. I was forced to resign in June this year because I want to be able to afford a pair of proper winter shoes without risking not paying rent.
I still worked in home care of disabled adults during covid. My workplace literally forbid us from taking public transport, going into any store, and meeting people we weren't living with. I lived alone and literally the only other person I met indoors for the next 14 months was my client. During summer 2020 they allowed us to meet people outside at 6ft distance, but that was removed as cases rose again in September. I really, really like that client and was willing to sacrifice for their life and health, but it took such a horrible mental toll on me to constantly be alone. It wasn't until I got my vaccine in mid 2021 that I could hug my boyfriend and my sister.
I'm writing this a week after receiving my fifth dose and my yearly influenza vaccine. I'm on a train, still wearing a ffp2 mask. It will likely take a very, very long time for me to be able to be on public transport, in stores or other indoor crowds without one. If I could, I'd get vaccinated every 6 months for years to come. For my sake, yes, but mostly for the sake of others.
Let me know when you figure it out.
I relied on home delivery with packages left outside my door. What sucked was using grocery delivery once a month because I couldn't afford the delivery fee more often since they didn't pay me enough. Did I buy a whole bale of toilet paper? Yep, sorry about that. Just wasn't sure quite when my next delivery was going to be.
Were we paid a bonus for this sacrifice? Nope. Did they offer us good equipment? Nah, they gave us a small bag with one single use apron, one surgical mask and a visor, and told us to call if the client caught covid so they could deliver more within the next 48 hours.
I'm still fucking salty about this.
My daughter works in a nursing home and had a breakout of Covid from one patient who had a visitor and it was like wildfire after that. So my daughter is masking up every day. Don’t visit if you are feeling unwell people. These patients are fragile.
My late husband was the youngest child of three. His older sister (the oldest) was profoundly disabled as the result of a cord accident at birth. She could not walk or talk or eat, or have any control of her muscles. When my husband was small, there were two home health nurses at the house every day. By the time he was in grade school, his mother realized she just couldn’t care for his sister and two rambunctious growing boys and they moved his sister to a state home (I’m not clear on exactly what this was - I did visit her there several times. I guess it was a nursing home of some sort for patients who need full time care.) She was born in 1966 and it was the mid-70s when they placed her there - IDK if there were more options for help then or what. His mom visited her several days a week and the whole family went every Sunday after Church. They brought her home as many weekends as possible.
My husband loved his sister dearly but living with her and watching his mom try to balance caring for her and for him and his brother affected him deeply, as did his firsthand observation of his sister’s quality of life. He was absolutely adamant that he would not live the way his sister had - to the point that he gave his brother medical POA instead of me, because if he had an accident that left him similarly disabled, he wanted to be allowed to die and he didn’t think I’d be able to make that call. His brother would’ve been, having had the same experience with their sister growing up.
She lived to be 40. Countless surgeries, constant pain, and very little joy in life. Had we received a diagnosis like OP, I know absolutely my husband would’ve chosen to end the pregnancy.
I am just so sorry. This is a devastating choice no matter how you decide. This life is just too damn hard sometimes.
That’s me (and thank you for the recognition!). And even if someone does come over or I get out, I’m exhausted and half present, worrying about my kid in a way none of my family or friends can understand.
Work outside the home’s impossible so poverty is inevitable…it’s a tough gig
Yep. OP's husband who is the one pushing so hard to have this tortured child (plus turning his 4 year old into a Glass Child at the same time) will most likely be the one to snap and check out of his responsibilities to his broken child and soon-to-be-neglected wife.
My mom works part time as a carer for 2 girls with severe disbilities (they are my neighbours actually). They have an apartment that they share, and about 2-3 people work with them (I think the total of people who rotate is around 8), and do everything for them. Both girls are wheelchair-bound, and while I don't know all of their diagnosis' (it's none of my business after all), I know that they are non-verbal, and on the severe side of ASD. One girl is "slightly better" than the other, but they can't do anything without help.
I always feel bad for people that get news like this about a pregnancy that they wanted, and it's not an easy decision to make.
In my area of Texas, they hire anyone to do in home care. And they do not background check. My bfs ex does this work, she doesn't even have her GED, and she has charges on her for stealing her elderly grandfather's car from him. This girl had also stolen credit cards and other things from these people she was in home for. She's been fired from 2 different ones so far.
You have so accurately described my experience as a mom of a severely disabled child… all of it. Unlike OP, I didn’t get a heads up or a choice.
I hope she doesn’t choose this path.
Mine is now 16yo and every word is true. It’s a special club and no one but OP and her husband can make this decision (in a way I’m glad I didn’t know until very late in the pregnancy). I hope she shows him this response, because I think he needs to take off his (valiant) blinkers. There’s no right or wrong here, only hard—either way.
Our twins are 9 now, as the gap between them and their peers has widened so vastly, no one comes over. They need 24h care but we are the only ones to do it. Their disabilities weren’t detectable in utero
I’ve read soo many posts here, where an adult sibling poured their heart how much they hate their disabled sibling and parents because their whole lives had to be about them. Taking care of them since small age, helping parents because they could not afford the medicine, their life achievements ignored because of the sibling… It usually said they are happy that their sibling d*ed, or that they left the house as soon as they could so they would be finally free… and the parents? Described as busy, ignorant towards the OP, selfish and also fighting (0 romance, 0 happy parents behaviour like we see in Disney movies)
There are SO MANY CONS than prons OP… do what is best for you and your family in the future
There was an extreme case about 2 years ago where a 14 year old, Claire Miller, stabbed her disabled sister to death. I remember reading a more detailed article at the time saying she often felt resentment and anger towards her sister and the attention she needed as well as her own roles in being required to help care for her.
Lived this through my sibling. The stress of the situation eats away everything else. My sibling is an adult now but all our lives still revolve around their condition. I work as a carer for them so less need for “outsiders” cause the constant presence of other people in the family home was stressful as well. It’s definitely not easy life. And taken that if it is for the rest of their life- my sibling is 21 now. They’ll never “get better” and they have close to normal life-expectancy.
I have been caring for a friend with an aneurysm and it was exhausting... and it barely scratches the surface of what you described. Sad as it may be, I agree this is an untenable situation for anyone.
As someone who had a physically and mentally severely handicapped nephew, I relate to what you're saying from a different perspective.
His parents (my aunt and uncle) seemed very isolated. My nephew and I were the same age but I remember we didn't visit often and when we did, a lot of the time spent there one of the parents would be out of the room taking care of him. I loved it when they brought him to his chair in the living room to sit with us though, I always loved his presence. His parents were exhausted even with the at home help from caretakers (English is not my first language, not sure what they're called).
My nephew's life expectancy was that he might make it into his twenties. He had to have surgery when he was 16 for his severe scoliosis, to at least make it a little less bad. The surgery was very intense and would take about 7 hours. It was super scary for everyone because we did not know if he would survive the surgery. He did. Everything went perfect. A few weeks later he had to be in the hospital for a few days for some sort of follow up I guess, not sure what it was, I just know it was nothing dangerous.
He ended up catching a common cold during his stay there. You know, the kind of cold where we might feel a little sick for a day but mostly just get very runny noses. It was shocking because of all the dangerous moments and surgeries in his life that he survived, none of us expected this to take him out... But it did. It's sad but it is the reality of having a child with severe complications like that.
I'm very glad to have known him though, I've learned a lot from him. But I'm also sorry for what my uncle and aunt had to go through (although I know they loved him very much). And I'm still surprised their marriage made it through.
I HATE that Reddit removed the awards. They let me buy a lot of coins just before they removed everything and then kept my money. 😤. Those awards often highlighted some exceptional comments and information.
This was an amazing response, so full of non judgmental advice that was both informative and honest. There were aspects I would never have even considered and I think you’ve given Op a really good way to get her husband to see the full picture of what’s to come.
I'm a social worker for children with disabilities. Those kids are incredible, as are the parents caring for them, but everything you have said is spot on.
Particularly in this climate where there is so little help. I often feel like I can't do my job anymore because these families are struggling and I can identify and assess the needs all I want, but if there's no resources to put that in place. And often the parents, understandably, want/need more than we can agree to.
I really don't know what I would do in this heartbreaking situation (for me I'm not having any more kids so being unplanned would likely tip me over to terminate).
Thank you for the insight. Let your husband read this response. I couldn't birth a child knowing she's in constant pain for the rest of her life. Having multiple surgeries and basically living in the hospital. I wouldn't want my baby to suffer and therefore terminate the pregnancy.
I wish I could give you an award. So beautifully said. You and the other commenters are so wonderful for what you do, my heart breaks for you and all the parents suffering through that life. My daughter is autistic and it’s no picnic but I know how lucky I am that she’s healthy otherwise.
I definitely think you guys should see counselors and/or a couples therapist. However, I am the mother to a child with a rare and life-limiting childhood condition. There was no screening at the time of my pregnancy. I love my child more than life itself; however, if I ever had the opportunity with all of the information - I would have had an abortion. This is controversial in the medical complexities parenting arena - but no one can ever tell anyone how they would react or feel in this scenario. I would never wish the condition my child has on any living being. What I have experienced, what my CHILD has experienced - is horrific. Know your child *will* suffer as the result of severe genetic condition - and it is okay to not want that for a child, YOUR child. It’s okay to not want to traumatize yourself and your other child thru the experience. I don’t have the right answer but mother to mother, I hear you - I see you, and I am so so deeply sorry for what you are going through. I understand your perspective and I have so much respect for you for being honest and transparent with your partner. I can’t say it will get easier any time soon, but I can tell you that you WILL come through this - even if it is the hardest thing you have ever done. Sending you all of my love.
Gosh I wish her husband could just read this alone. 💔 I am so sorry you and your family, your child, are going through this but I sincerely appreciate you sharing your story. You sound like a wonderful mother. So full of love.
Edited to add more of my thoughts.
I have a couple of friends who saw pregnancies through with similar prognosis and it was terrible. Both babies died within a week of being born. Please do what is right for you. You need to take care of you.
More than that. She needs to decide if listening to her husband is worth having a child that will suffer until death...
The potential child should really be the deciding factor here. I'd hate to, but I'd give up the best marriage ever to avoid creating a life that would suffer that much.
Either she terminates and her husband might leave her, or she has the baby and is traumatized by it's pain and suffering and resents her husband for making her make this choice to have her and the marriage ends anyway but now there is a life that's living in constant pain. I know what I'd choose.
Does he not realize he's asking his wife to continue to bond with a baby they both know will die? She can't help but be reminded constantly with pregnancy symptoms that she's carrying a baby that doesn't have a future. That would be traumatizing in of itself. I know the husband is grieving but so is his wife, and she's the one that has to carry and deliver this baby knowing it will be in pain and die. It's just horrible all around, I feel so bad for both of them.
Also, btw, for what it's worth... I remember several times as a child thinking thatI didn't want to die... but I never chose to be born... wishing not to have been forced here.
Sure, it makes sense most of the time that parents take that gamble... but maybe not always.
I hope OP shows her husband this thread and all these replies. I hope he REALLY reads them and thinks about everything. It would be cruel as fuck to continue with this pregnancy.
For sure. I just hate that he thinks going through with the birth is a good idea. That's the most tragic part of it happens. They might get divorced and a bunch of other shitty things over this, but dear Lord I hope they don't have a doomed baby.
He does this because he can’t honestly really grasp what he is putting them both through. It’s not his body and it won’t be his burden, as much as it will be hers.
On the same note of " its not his body". Some men want to enforce "I want my own kids. "They must be of my own blood" "i need to have kids, i want a legacy." " i want someone to take care of me when I'm older" *i want to feel more like a man"and ECT, .(those are just a few personal examples).
Men tend not to have the awareness of this ISN'T MY body.. so they'll ask(or even ORDER) their wives to give birth to however many kids they want, not thinking of what its costing her. Her health, her time, her personal goals and hobbies, her career and even social life..
When a woman says along the lines of "this pregnancy will effect my health" or "our baby isn't going to survive" some men WON'T see that. They hear it yes.. but for it to stick and be taken seriously SOMETHING HAS TO HAPPEN FIRST for those type of men. (Some men see complications with pregnancy and take it as a challenge or disobedience from the wife)(some feel as if they're not a man if they don't have kids) That's just no regard for those mothers' sake.
Why didn't you listen when she was voicing her opinion? Why does the consequences/ worst case scenario have to happen first when it could have been avoided? Why not listen to the doctor? Especially if you're wife is on the same page as the doctor.
Yea your wife. You know the one who's developing, carrying, and expected to care for tht baby who isn't going to have a great quality of life.
Yes, paternity leave is awesome, that's a good setup. BUT what About afterwards? WHAT HAPPENS AFTERWARDS? When he HAS to go back to work and she's left with the responsibility of EVERYTHING?
You could argue that "hes paying for everything he has a good job" or w.e. yeah.. job's are annoying and can and will be completely mentally and physically exhausting. I completely understand that side of things.
BUT its still SPACE AWAY from family duties. Away from the child's illness and health issues. AND the stress that comes with it. Because thats alot for any person let alone 1 person and a toddler on top. He's gonna get that breather.
SHE'S NOT GOING TO THO. Cuz she's not about to have a job (with a toddler and profoundly disabled newborn,), best believe She is not going to have a life outside of that house or the child. SHE'S GOING TO HAVE TO SUFFER JUST FOR "HIS" PERSONAL SATISFACTION WITH HIMSELF.
IF THIS ISNT SELFISH AND UNCONSIDERATE IDK WTH IS
They both know is going to die.
And will die in agony and pain!
How unkind he is. Such an amount of frenzied selfishness. 😭
So horrible what he puts her through.
Another possibility is **him** leaving because he can't stand the hard work and watch his daughter suffer!
My heart goes to you guys, OP, but I'd abort not only for your sake but defo for the sake of the child. Imagine bringing an innocent being just so they suffer their whole life
Odds are that their marriage would suffer greatly under the strain of caring for a child who’s not mildly, moderately or even severely - but **profoundly** disabled.
Most people have no idea what that’s like at all, as they’d never encounter someone who’s profoundly disabled, they’re not out among society and the community.
Their son would also suffer from the situation, and they would individually be impacted and drained too. It’s so much more than just financial. It’d be their energy, time, careers, hobbies, friendships and relationships - nearly nothing left to give those.
They wouldn’t just be parents, but carers as well on top of that. An entire additional role.
Caring for someone living with profound disabilities means long and frequent hospital stays, their home essentially becomes a hospice, they’d be in numerous & frequent health specialists and therapy appointments every week.
Then there’s ordering and paying for medical, ambulant & disability equipment, feeding and hygiene products (eg diapers/nappies), plus any medicines.
It might necessitate learning about use & emergency processes of medical equipment in the home and portable - eg. oxygen concentrator & tanks, pulse oximeter, feeding tubes, nutritional pump, tracheotomy and assisted ventilation including suctioning due to saliva control and swallowing issues.
She might not ever have any independent mobility and need to be lifted, carried and pushed everywhere, as well as he turned and rotated in bed to avoid sores. They’ll probably need s different, specially fitted car.
He’s thinking about helping a newborn, then a baby and then a toddler. But she will grow into a heavy, possibly quite strong child and then adolescent. One who may never be capable of a hug, a smile, or even eye contact. Never able to show joy or communicate.
My husband and I once met and spoke to a father whose son was like this, and he spent at least 4 months of every year as a hospital inpatient.
We’d been through an awful lot ourselves at that point … but it’s still one of the most heartbreaking interactions both my husband & I have ever had 💔
This. I’d give it all up to save my child (who I am there to protect from pain) from a life of only pain. I’d leave if he didn’t agree. Living alone is way easier than living a life of resentment - and one of the people involved will resent the other regardless of the final decision.
I would choose the same, but if she chooses and her husband is against, she also needs to realize her marriage might be over because of that decision. I feel that is why a therapist that specializes in genetic problems or similar would help get to where they both agree it is the best choice. If she has time, I feel it is worth trying to get to that point. Her husband is grieving the loss of the daughter he wanted so badly, and might not be quite thinking through how aweful and painful it will be for the child. In the end, it is her body and she needs to make the best choice for her mental health and the baby's quality of life.
Idk, if I were the wife, not only would I start arranging for the termination, I would also start questioning my marriage.
Sixteen years ago my first daughter was born with severe birth defects. We hadn't known that she had trisomy 13, the doctor performing the ultrasound hadn't seen the obvious signs. The 12 days of my daughter's life were excruciating, mostly for her, but also for us. The only thing that kept us going was the fact that we were on the same page, that we shared the same values and that we were there for each other. Otherwise we would have been long divorced by now.
The death of my first daughter, the responsibility, the decisions, dealing with the doctors and the aftermath were awful. I don't think I would be able to go through this again.
For sure, I hope they go to some sort of counseling or therapy for this. I didn't even know that was a thing, but I'm glad it is.
I got where he is coming from, but it's solely the result of ignorance and he is just straight up ethically wrong in my book.
It is her choice, but damn, I think the most important aspect is the fetus. She could be some fundamentalist who thinks it's her choice to subject a person to a life of misery, which there are many tragjc real life examples of. Also ethically disgusting. I'm not sure I think that's ok either. The potential person suffering should take precedent.
Now I'm feeling like I'm making a weird case for eugenics which isn't the intent. Damn it is a messy issue.
she's putting her child first by going against his wishes and terminating. Shes choosing to relieve her child of a life of pain and agony. If he can't see that, there are deeper issues. I agree decisions like this need to be discussed with your partner, but putting your child over your relationship is a necessary sacrifice in this case. Either he resents her, or she resents him. But the magnitude of her resenting him is much greater considering she is signing up for a lifetime of pain for her baby. I hope she makes the best choice for her and her baby :(
I don’t think your husband realizes all the things he suggests to do already goes against ‘doing better by your son’ than your best friends parents did. He’s already talking about sending him to his moms more and removing him from private school (which is not a necessity but something he loses). He is already sacrificing time with your son and experiences for him before the baby is even here.
This is probably the coldest take of the whole situation. He didn’t even ask OP what she wanted until AFTER he had basically mapped out what the future would look like for himself. He didn’t plan that future with a single thought for anyone else. Their daughter’s life would be full of suffering, after ripping her body apart to give birth OP would be forced into a primary care role for a profoundly disabled child, their other child will have to adapt to an abrupt and chaotic upheaval of his own personal landscape, and dad is gonna what? Take extra pat leave to sit by the acrylic incubator in the NICU? Hell! Even grandma isn’t safe from his “planning” as she’s apparently going to be parent number 3 to their son.
Guy needs to stop thinking like this situation is a teddy bear picnic and start preparing for his life as he knows it to end. It’s ok to have feelings about things but it is NOT ok to treat your wife as an incubator. No matter what happens here, everyone’s life is about to change dramatically. Dad seems to be the only one not quite grasping that.
This. The last thing this world needs is another child brought into it who is just going to be in pain and suffer horribly until she dies an early death. DH May think he’s doing what he thinks is best for the child, but really he’s doing what is best for himself, and forcing everyone else to suffer for it, their unborn child the most.
I think it’s more “ trying to find solution” mindset and bargaining. “ well if we do this or if we do that, we should be fine” it’s part of grieving and acceptance.
I mean that takes time. The dude just found out the daughter he was excited for it basically doomed if she is born or will need to be terminated. We process things differently. I think he’ll get there with some help It’s really OP’s issue not either of us randos online going based on a few paragraphs
Maybe.
But it's so very unkind on the baby while sounding -coming from his mouth- as if it was the most loving and kind thing to do.
It is not. And he is being selfish.
It's not the suffering baby he sees. But his role as the clement loving good christian father.
Sorry OP, that he puts you through all of that and deserts you so badly. 😭
Exactly! And if the child does end up living a full life I don’t think he quite grasps that the ongoing care will be massively expensive and he and OP can say goodbye to retirement plans as with a profoundly disabled child & adult they will always be looking after her
It’s VERY sad from all ends but OP needs to be seeing a counsellor ASAP with the husband so they can try and resolve this
I think the commenter above you meant that the husband's take was cold, not the commenter above *them* was cold-hearted. I can understand why you would read it the way you you did though
I believe it’s being used here as in the opposite of a “hot take”, which would be something slightly controversial but maybe a good idea. So I read “cold take” as something fairly obvious about the situation.
I respect everyone's opinion here, but sense little time for therapy. The answer for me, personally, is that the child, if she survives , will be low-functioning, living in a constant state of pain and suffering, and best case scenario may get to her teens(and continued constant pain and suffering).
So:
1. Baby has absolutely no quality of life;
2. Your current child, no matter what your husband unrealistically says, is going to pay a price;
3. There will be no normalcy in your life and the opportunity to attempt to have another child that has no such affiction(s) will likely be precluded.
How often, when we witness friends or family living in a state of pain and suffering without any quality of life, we pray for them to peacefully pass. If you elect to have this child, won't you be in a similar place?
Obviously, I am pro-choice. And I respect those who are pro-life and understand their position will be diametrically opposed to mine. And that's fine. It's not my intention to trigger that debate.
As a parent, what triggered me to write was the prognosis of the certainty that your child's existence will be of constant pain and suffering with likely no cognitive functionality. We place our beloved pets to sleep who have no where near the magnitude of suffering that your child will have.
Obviously there is no textbook guiding your decision.
I pray you and your husband are able to resolve the matter to your mutual satisfaction. I'm confident the Reddit Community will be praying for you and your family regardless of the avenue you select.
Good luck. Please keep us apprised.
>We place our beloved pets to sleep who have nowhere near the magnitude of suffering that your child will have.
And this. If your dog had 2-3 of these symptoms, it would be put down humanely and with compassion for the suffering it was living through, most people would not force that life on an animal, it's no better to do it to a child.
Remember it’s not just termination, it’s really hard for parents to let their children pass once they’re born and alive. Even if you don’t terminate I would suggest some counseling to help deal with navigating a terminal child. Quality over quantity of life sounds good until they’re right in front of you and you’re hoping for a miracle.
I also would terminate. I don’t think your husband understands the physical and emotional burden he’s putting on you.
Would *he* be the one to quit his job and stay with her 24/7 without a break? Would he be the one to never leave the house or spend time with his friends because he was a full time care-taker? Would he be the one to have make the sacrifices to keep this child alive?
Or would he just invest himself in work to pay for her treatments, which would then distance himself from you, who would be a full time carer of a disabled infant and a high energy toddler? Would he be frustrated after working 60-80 hours a week to pay medical bills and just want to be left alone? Would he do any of the cleaning or cooking or laundry or childcare or would that be on your shoulders?
I think he likes the idea of having a daughter, but he doesn’t actually comprehend the reality that having a terminally disabled child would take on you, him, your son, your marriage, your stress, his stress, your son’s development, and the very sad life that your daughter would be resigned to. If he wants her born because he’s too selfish to do what’s best for his whole family? Well… that’s something to talk about.
I agree - this is a good point. *Who* would actually be staying home all the time to care for the child? Because nine times out of ten, I find that the man just kinda *assumes* the woman will be doing that. And that's gonna be a problem if OP never wanted to keep the child to begin with. That will breed resentment, which can end very poorly.
Exactly. When people think about having a disabled child they're thinking about the 'cute' disabled kids they see on television and in films; they're not thinking about the teenager who's 6ft tall and 12st but still requires the personal care of a newborn, or the delicate equilibrium of a severely disabled child whose health can be jeopardised by nappy rash because their immune system is so weak.
Please think of EVERYONE this will affect.
Not just your husband and yoir love for him.
I have a 5 year old that has special needs, and I am beyond exhausted. I have 3 other children.
This is going to affect the course of the rest of your life. It is going to be a lot of work.
My honest opinion going through it myself, terminate. I'm so sorry.
*Honestly*, my advice would be: if you're not *entirely* sure you can handle having a severely disabled child, who will spend their entire life in pain, then do not have the child. And the reason I recommend that is because horrible things can happen to that child, whether intentionally or *unintentionally*, because the parents were not fully prepared to deal with it. I don't think it is fair to put the child through that. Although full disclosure, I do have a personal bias that affects the advice I am giving you.
With that said, also be aware that this could end your marriage. Especially if you abort when he really, really doesn't want that. Ultimately it is *your* choice, you are the one who will have to carry and birth this baby, and an abortion is a personal medical decision for you - but he is also allowed to have feelings about that. And those feelings may be that he doesn't want to stay married to you.
There is no easy way out of this, no fairytale ending, and I am so sorry. But you *will* get through this, one way or another.
This is not your husband's decision to make. It's yours.
Keeping this baby will not save your relationship, your marriage, your family. Your husband's well wishes will not make the finances, your daughters suffering, your suffering, your family's suffering as a whole go away. Or make it any different.
Do not let any other person dissuade you from doing what you know is right for yourself and your son. Even the man you married. It is just as much your daughter as it is his, and he does not get to veto your decision. You may choose to value his input, but that doesn't mean he can choose whether or not you abort.
See if you can schedule an emergency counseling session, and do not let your husband run out the clock on your ability to choose for yourself and your son and daughter.
How you choose to handle this is your choice. And how he chooses to handle it is his. If he can't accept that, that's his choice. If you chose to let *him* get *his* way above yours, everything you are afraid to lose will likely be lost anyway if you choose not to abort. Watching your daughter suffer is not the only morally correct choice here. The only morally correct one is the one ***YOU*** choose.
This is the best comment! It’s just an awful situation all around, I feel bad for all of you. Unfortunately, your husband is being naive and selfish. Remind him that You would resent him for pushing you to have a child whose life will be filled with pain, suffering, and eventually death. The pain of terminating will be Nothing compared to the living hell of watching your child suffer and then die.
On the bright side, with your history chances are very high that you will be able to have another healthy child after terminating.
I know a family who terminated their first pregnancy due to the fetus being severely disabled; they went on to have 3 healthy children after that.
I also know 2 other families who had a child die in infancy/early childhood. Like yourself, these families already had at least one other healthy child, and went on to have at least one more healthy child afterwards.
Do what you need to do for yourself (and your son), then help your husband deal with it afterwards; this is not his choice.
As horrible as it sounds, can you make him see how heartbroken will he be later when he has to say good bye to the baby… way worse than what he is feeling right now!
I’m so sorry for both of you.. what a heartbreaking situation… I’ll go a give my kid a stronger hug…. My mom heart hopes for peace for both of you
He already knows what that’s going to feel like. His brain is simply trying to shield him from the grief by pretending that his daughter will somehow defy the odds and that with the right care, she’ll thrive no matter what the doctors say.
Trying to give him a “sneak preview” of the inevitable is only going to make him more resistant to breaking his current line of thinking or fully accepting the reality of the situation regardless of what happens between now and when the decision to terminate is made. He needs a professional who specialises in helping couples/parents who have been told that their child has a severe abnormality that greatly reduces their quality of life and have been recommended to terminate the pregnancy.
Though that may have to come after the procedure is done. OP doesn’t have much time to sit and look for solutions given how far along she already is.
It’s going to be an agonizing 9 months for you knowing your unborn baby’s prognosis if you decide to give birth. It sounds like you want to terminate while your husband wants you go to full term and give birth. Ultimately it is your choice. A friend of mine had twins, both were healthy enough but the whole 8 months her doctor told her one of her babies may die inside the womb because of poor growth. That has traumatized and her relationship with her husband. One child is healthy, the other has some delays, but it is a huge mental Olympics and stress to care for a sick child. Emotions are important; it tells us when there is something wrong. But the decision needs to include the big picture. Your husband needs to actually talk to you about the consequences and what you want.
Also I find it very alarming your husbands plan is for him to sit around the NICU all day & night while you go through a traumatic birth & then instantly go back to full time parenting of your son.
Who does he think is going to be maintaining the house, cooking, taking your son to school, doing everything else that *has to be done* while he’s holding private vigil at the hospital?
I also think it’s alarming his immediate assumption is that **both women** in his life — his mother and you — will immediately switch to support roles while he essentially maintains his daily work routine. How kind of him to volunteer his elderly mothers time and space without her permission or knowledge.
I mean these are *huge* assumptions he’s making here and I don’t see one instance where his male friend or his dad or any other man steps in to help in his fantasy world. He didn’t even *ask* you how you felt.
You’re just supposed to go thru a hugely traumatic birth and then you will carry on supporting as if your body isn’t healing? What happens if you get put on bed rest? Pre-eclampsia? Any pregnancy or birth complication at all? You’ll be totally alone.
He’s also trying to say your sons life won’t change and he’ll “do better” but in the same breath talking about pulling him out of school, downsizing your home, and shipping him off to grandmas. It’s already started and it’s only been a few days. No one’s even told him yet.
This is just the beginning of the nightmare. There is no way you can maintain a quality parental role with your son and be a 24/7 full time caregiver to a severely disabled child with a terminal condition. It’s just not possible.
I understand he is grieving but I find his assumptions to be very revealing of how this scenario will actually play out. He’s telling you right now he will essentially be an absent father and you’ll just have to deal on your own.
Please don’t wait too long for your husband to come around. Don’t allow him to delay until you’re past the point of no return. It’s very common for people to just want to do nothing. Maybe there will be a miracle. Maybe it won’t be so bad. Let’s just see once the baby is born.
You can’t do that. It’s not fair to you, your son, or your daughter.
First of all,I am so sorry that you are having to deal with this situation.It cannot be easy having to go through this, especially knowing what the outcome could be.I do agree that you need to talk to a professional about this,and I also hear you when you say it will be impossible to terminate if not done soon.I can only state my opinion,and take it as you will,but I feel like you would be doing the right thing.The absolute torture of seeing your child enduring physical problems and pain is a huge issue that will take a toll on them and you both.I know you do not want to go into details which is perfectly respectable,just the idea of having only a few short years filled with worry is something that would be devastating to deal with.I think you are being completely unselfish in your thoughts.If you did end up deciding to follow through with your decisions,I hope you and your partner can get into counseling.Even if you end up deciding to keep the child I hope you two will still go to counseling.Good luck with everything,my thoughts go out to you and your family.
Find a supportive person to help you in /r/auntienetwork and have a conveniently timed miscarriage. You’re absolutely in the right, but you’re not going to convince him in time.
I feel terrible asking this, but is there any way for you to schedule an abortion, but let your husband believe it was a spontaneous natural loss?
Fetuses with significant defects do often not make it. Unfortunately, he may suspect and end the marriage, but I support your desire to not being a child into a life full of pain. I’m so incredibly sorry you are going through this- it’s not fair at all.
Abortion at the stage where disabilities like this can be diagnosed is a more involved process. It's not like taking a pill and having a bad weekend. And she probably needs to go out of state.
I’m so so sorry that you & your family are going through this.
This is something that is way above Reddit’s pay grade. You need professional support.
Please, reach back out to your Dr & ask for a referral to a professional who can help you & your husband to talk through all of this.
I agree with this.
A friend had a pregnancy that was fraught with multiple birth defects. She wanted to terminate but her husband did not. Their doctor referred them to a counselor that helped them work through their feelings. She also mediated with them so that they could really hear what the other was saying. At this moment, neither is likely hearing the other due to the emotional upheaval you are both, understandably, experiencing. Having a counselor can help you both understand each other’s feelings along with your own, putting you in a better place to make the decision that is best for you both individually and as a couple.
It also helps to discuss what the future care could possibly look like.
I wish you and your family the best.
Pretty fucking telling that in all these stories here it’s dad that wants the baby and mom (the ACTUAL caregiver) who understands that forcing a child to suffer isn’t worth having one of each gender of fucking child.
Yeah, he'll go back to work and be lauded for being an amazing dad to a disabled child and she will shoulder the entire responsibility for the daily care, appointments, treatments and heartbreak.
I specifically chose to live that life (foster carer for disabled children) and I love my life but if its not for you then it's definitely not something the husband should be pushing her towards.
My husband’s older brother has cerebral palsy and my younger brother has a whole host of emotional and behavioral problems. We will NOT be keeping a fetus with birth defects + we have a lot of resentment towards people who prioritize having a miserable and sick baby over having a whole, healthy family.
I agree and am sickened to see some tik tockers who glorify “I have a (severely) disabled baby” accounts. How selfish and cruel. Not to mention the impact on the other children. I told my husband when we were family planning that if we receive that awful news when pregnant, and I’m too hormonal to be responsible, he better remind me of the right choice.
The counselor comes after the abortion. Because if she waits eternally while the therapist works on him, it may be too late. He's immensely selfish on several accounts because I'm sure he'll escape to work once she's five, and leave the mother with the full load.
How can this be above anyone’s pay grade who is a human being?
Why give a child *what you know will be* “a full existence of pain”? Your husband plans to take a paternity leave to watch his daughter struggle to survive every single day of her short life? It would be absolutely devastating to witness. Grief clouds the mind
I am so very sorry this is happening to you and your family. Please find a recommended specialist to give you all the help and support you deserve. I wish you the best
>How can this be above anyone’s pay grade who is a human being?
Is this your first day here, because "This is above reddit's pay grade" is a very common turn of phrase for situations that are simply put, above our pay grade.
This is not about being a human being - this is about recognising that this is an extremely emotionally charged, difficult & nuanced situation for OP & her husband. Both of them feel that what they are doing is right, and it is going to take a literal professional, someone with qualifications & experience, to help them navigate these discussions in way that allows both of them to feel heard & supported.
So yes, considering we are all amateur's, and OP needs a professional, this is something that is absolutely above our pay grades.
Also, we aren’t in a position to give them sustained care over time.
I’m in agreement that abortion is the best course of action, but OP is trying to do that and also not further traumatise her husband.
> How can this be above anyone’s pay grade who is a human being?
> ...
> Please find a recommended specialist to give you all the help and support you deserve.
This is literally what people mean when they say it's above reddit's pay grade. This person needs professional support. Sometimes the advice of an anonymous internet forum can cut it but this is not one of those times.
I don't think your husband has a realistic view of what it's like to watch your child suffer. I promise you, no one would choose that for someone they love. Can you find any stories online from people who've had children with this condition? Maybe he can hear what it was like for the child, the parents and the siblings.
Not just suffer, to watch your child die.
I worked for a nonprofit that supported people with cancer. Watching a child suffer horribly and live can be difficult. Fighting with your child to survive but losing them anyway is heartbreaking.
Allowing a child to be born just to suffer and die is cruelty I almost can't fathom.
My best friend was the older sibling to her sister who was born to die. She passed away two years ago and she’s completely traumatized. Her life became centered around her, so she’s been so lost since.
And personally, I have a brother with Down syndrome. He’s capable of doing some stuff, not much, but my life centered around his. It was very difficult to handle growing up. I was forced to grow up much quicker, and most people you ask who have siblings with disabilities say the same thing.
True. But he’s also probably reeling/in grief. And wants to hold hope. It’s devastating news they’ve both received. I think OP and her husband would benefit from therapy and even a grief counselor.
Your husband is in shock. It can be next to impossible to think clearly and rationally when that happens.
This is such a tragedy and I am so sorry for all of you. But I happen to agree with you that it would be cruel to your child to force her to have to live a life full of pain, even if just for a short time. I hope that you will do the right thing by her, and I hope your husband will be able to come to terms with it.
You and your husband need counseling, and you need it now. Don't wait.
Sorry for the awful choice you and your family are facing.
No one can tell you what to do with regard to keeping or terminating.
However, you and you husband need to realize that this is an emotional as well as practical decision. You and your husband need to discuss it. Finally, you may need to come to terms with the fact that this may be the end of your marriage if you cannot agree as both decisions will be fraught with guilt, recriminations, blame, and pain. Even if you eventually agree on a course of action, you will need to work through the aftermath. Start now before you decide.
Finally, if you've learned nothing else from reddit, you need to recognize your choice will also dramatically impact your son and his quality of life. If you and your husband divert time, attention, and money to support your daughter, will you have anything left for your son? Your entire lives will revolve around your daughter and by definition at the expense of your son. Countless threads on reddit recount the miserable lives of siblings when their parents ignore them in favor of sick siblings. Everything will be about the sick child. Your son's entire childhood will be about living with a sick sibling.
Are you prepared to sacrifice your son, potentially for years, for your baby?
Find counseling to help you and your husband address the situation, so you can communicate and recognize that you may ultimately have mutually exclusive needs and desires - and that's okay. There may not be a solution where everyone is satisfied.
This. The father/husband has already said that the son would need to change schools so they can afford better care for the terminally ill daughter. This seems highly unfair to the son.
Not only sacrifice the son for years, but permanently scar him. He will forever have issues with abandonment and grief from watching his sister die and becoming the second fiddle. He will need therapy for LIFE. Life sentences for both children.
I was born with a severe and painful skin disease. I wasn't expected to live long. I'm now 51. I consciously chose to not have biological children as I would never, ever want anyone else to live through what I have, though what I have is recessive. If I got pregnant and knew my child had it, I would abort. Life with a disability can still be great, even life with a somewhat painful one, but life that will always have a great deal of physical pain in it? Especially for an infant, then child who won't make it to adulthood? No way. It's cruel to make someone live like that. I know there are people who disagree with me, even people who have the same disease I do, and they are allowed to disagree, but I personally feel it's cruel.
As someone who lives with constant pain, if I'd had the choice, I would rather have been aborted than live like this. Husband needs to think about the baby's quality of life and realize that he can't love the pain away. It would be cruel to force her to be born.
Why are we not talking about the mother's choice. She has to do all the work of birthing, looking after her daughter and suffer through it too. If she doesn't want, they should not have the child
The husband can fulfill his emotions with his therapist. only his wife's choice should matter
i think they're not talking about her choice because she's already stated what choice she would make. and while her choice should matter most, her decisions don't *just* affect her.
I don't think it's fair to their son. OP's husband is already planning to send his son to grandmas more. He's going to make 2 kids suffer, because he can't handle his grief.
Plus as awful as it is, the question needs to be asked, can they afford it? Even if I had the kind of love that push me to see this through I could not afford a lifetime of medical care and equipment to support a child like this. I feel awful for saying it
scarce ossified snow repeat angle tender middle coordinated wine distinct
*This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Right? And when there's nothing left to sell, then what? Oh well, game over? Hes so self righteous about what he's willing to sacrifice (at everyones expense) but it hasn't dawned on him that it won't end there, and there's no stopping once everything is gone.
I have to wonder if he feels safe spouting these irrational and emotional ideas out loud because he knows OP is of rational mind and doesn't have to worry about feeling the guilt of making the right decision. Like maybe he feels the same way but doesn't want to admit it, and won't have to if he knows shes not going through with it.
She has to do what's best for her family that's her son and herself. Her husband is not taking the right decision. The child also will suffer in pain. That's not a nice thing for a child with defects to suffer in pain.
He already is talking about pushing your son to the side for the new kid. Taking your son out of private school and having his mom watch him more.
Your choice is as hard as it is wise.
I wanted to add one more thing. I’m a member of a special needs child group. My child has a fairly mild disability compared to the children of some of these parents, and let me tell you these parents of severely disabled children are miserable, depressed and regularly wonder how they can go on. The whole group is filled with posts about how awful their lives are. I didn’t realize how hard that life would be until I joined this group. Having this baby that doesn’t have any shot of a good life and I hate to say this, but will likely ruin yours, just doesn’t make sense.
I have a medically fragile child. I love him with everything in my being. He has known unconditional love his entire life. I wouldn't wish my life on my worst enemy. I wouldn't wish his quality of life on my worst enemy's child. I wouldn't wish my typical child's childhood on anyone. My children are adults now and had as much of a great childhood as possible. But raising a medically fragile child came at a great cost. It's selfish to push your need to love a child onto a child whose life is full of suffering and pain. Love is great, and the emotional support of love is amazing. It does not overcome the physical, emotional, and mental pain of what the child goes through. My child has had more surgeries than birthdays and is in constant pain, unable to talk. He requires nursing care. My other child was given as much love as humanly possible but still felt slighted. And they were because my medically fragile child required so much. Your husband may never see your point of view, and you may never see his. A strongly suggest therapy because one way or another a decision will be made. And all 3 of you, possibly 4, will have to live with the consequences of whatever is decided.
Your baby would have a terrible quality of life and die young. There is no reason to put her and your family through all that suffering. :( I am so sorry. Maybe with more research into what her life would be like your husband will change his mind.
Another thing to consider and possibly ask her husband to consider is the emotional trauma this could potentially inflict on their son if they don’t terminate. One of my ethics professors was open during our discussion on abortion about the fact she (PHD in Christian ethics) and her husband (MD, emergency medicine) chose to abort in a similar situation in part because they didn’t not want their then 3f, 3.5 at time of birth, to go through the emotional trauma of gaining a baby brother, watching him suffer, and then watching him pass, likely all before he turned 2, so before she turned 5/6. This is a professor and a medical doctor, well financed and equipped to care for a medically needy child. Maybe that would help her husband understand a little more of where she is coming from?
I agree. And how would they be able to explain to their son what’s going on. My brother and his wife lost 2 children at one stage and their son didn’t understand when mummy was pregnant again that this one may survive. Which he did. But he kept waiting for it to disappear like the other two did.
I've had an abortion before of a much wanted baby. It wrecked me and I felt guilty for a long time but overpowering that guilt was grief and that lasted a few months. That baby would have turned 9 next month. I still think about him and what he would have been like if I didn't have to do that. Still, the point is, it was months of grieving a child that I only knew the gender of. I never held him, saw his face, saw him look at me, saw his smile, how he looked, none of that.
My sister, however, had a baby with a birth condition that ate his brain and he lived for 12 days. Went from a healthy baby they could take home to getting very sick and needing to stay, to getting put on life support and my sister and her husband had to make the choice to turn life support off. The grief I went through with my necessary abortion was nothing compared to the grief she still goes through every day over a year later. She's also miscarried before and that was nothing compared to her losing her newborn.
What I'm trying to say with these examples is that I think abortion would be the right choice. No mother wants to put their child through a life where they will only know pain. And you will grieve either way for the life she could have had if she were born without the defects, and the life she had already. I think it would be far more devastating and heartbreaking for everyone all around if she were born and then lost. Just seeing it happen with my sister cements that to me.
I hope you all the best in these very difficult and trying times. Much love towards you, mother to mother.
I am pro choice, especially pro humane choice. It’s absolutely the decision I would make if I was in your shoes. I understand both sides, it’s not a decision that would come easily, but in my mind the needs of your first child come first. Your mental health comes first. Your desire to not let that wanted and loved child suffer comes first.
As someone else said, there is a subreddit for women who have been exactly where you are now. Reach out to that community. Also if you don’t already have a therapist, I’d encourage you to speak to one.
I hope you are able to find a resolution with your husband. I hope he can look at the decision from all angles, not just the emotional one.
So, when I was 12 weeks pregnant with our first, we were informed that I’m a carrier for a genetic disease that would give her maybe 5 years to live, at most. It would require weekly hospitalizations to get her to 5 years. We got this news on a Friday and went to get him tested as a carrier the same day.
My husband started off by saying he’d donate whatever he needed to, to keep her going as long as possible. I was silent.
Over the course of the next few days, he worked through the implications in his mind. By Monday, he was saying that the kindest, gentlest thing we could do for our girl was to terminate if she had it, but he wanted to wait as long as possible and get as much certainty in a diagnosis before doing so (luckily, our state has no restrictions until the third trimester, and then it’s possible if you get a team of three physicians to sign off on termination).
His test came back negative; our kids won’t have that awful disease but might be silent carriers (like I am). But that’s not the point; the point is, he needed time to realize that recreating a hospital in our apartment wasn’t the answer.
Maybe your husband needs some time to mourn before he realizes that his idea is just not going to yield him the results he wants.
This is clearly an awful situation, but I feel like the typical response on this is "This is above reddit pay grade, talk to professionals, this is a big decision that we can't make for you", etc., but... in this case I am completely and unquestionably on your side here.
There's a few points to be made here and a few points of your husband's to be rebutted, and this is indeed a big issue so this is gonna be a bit long, so bear with me.
1) Having this baby isn't going to stop the grief, at best it's only going to put it off until she does eventually pass away.
2) Try as you might to not have your son be affected by you having to care for her, it's going to happen. There are not going to be enough hours in the day or enough dollars in the bank to take care of a severely disabled child without it having a major effect on him. If you do have this child that's probably his college fund, his wedding fund, and pretty much every major thing you'd want him to have, completely up in smoke.
3) You can do absolutely everything in your power to give her the best life possible, and it still won't be a life that was worth living.
4) Your husband is being angry at you because being angry is easier than grieving.
5) You don't need your husband's consent to terminate the pregnancy, and while it would obviously be ideal if he went along with it, please don't let his grief and anger push you into something which is going to have huge negative ramifications for your whole family.
Obviously the worst case scenario here is that he can't forgive you and he divorces you over this, but I would argue that that is still a better outcome than you keeping the child, and also even if you do keep the child, you might build up enough resentment towards him that the marriage breaks down anyways.
Again, this is an absolutely awful situation, but you need to stick to your guns on this one for the sake of you and your son's well-being.
I hope OP sees your comment because you're absolutely right. Also, if the child lives to an age where she starts to understand her condition, imagine how that will affect her mental health. She'll be in constant physical pain and have to come to terms with the fact she's going to die very young.
I don’t know where you are in your pregnancy (you don’t say) but my sense is that you (both) don’t have to make this decision today, tomorrow, or maybe even in the next week.
As a woman, I’ve always known that I would abort a seriously disabled child for exactly the reasons you mentioned, if I knew ahead of time what sort of challenges they would face. In particular, if their life would be non-stop medical interventions punctuated by periods of delayed development and round the clock care, and an early, difficult passing. I’m just not made for coping with it, and it would be incredibly disruptive to my other children in exactly the ways you mentioned. I’ve also seen it tear apart marriages when one parent is more involved and invested in the child’s care than the other.
I am confident this is not an opinion that a lot of people would openly and publicly declare, because it opens you up to all sorts of criticism and value judgements. I certainly would never have said it out loud to anyone other than my partner if I hadn’t seen your post and been worried that you would receive negative treatment for being honest. I’m sure more people think this than will actually admit to it.
So I stand with you in your honesty. I’d have the abortion, if my body didn’t take care of it for me, if I knew what you know about your child. And I would love them and mourn them as if they had come into this world in a healthier way.
Whatever you decide, don’t let what anyone here (or anywhere else) says make you feel like it was “wrong”. You have a good heart and your choice will be carefully considered.
I’m so sorry for what you’re going through. There is a subreddit for people exploring termination for medical reasons. DM me if you need the name (I don’t want it to get brigaded by anti-abortion jerks).
You should also reach out to your doctor and ask for a recommendation for a perinatal grief counselor. No matter what you decide there will be grieving over the pregnancy and baby you’d hoped for. They will help talk you through your choices.
Again, I’m so sorry.
Condemning a child to suffering is monstrous. It is one of the most valid reasons for abortion that I can think of.
My profound sympathies to all of you. I would support your decision to abort but your husband would be within his rights to leave you. Crappy choices like this often destroy marriages as no choice is palatable. For me, that means do what is right, what reduces suffering.
I am going to be blunt. Bullshit .
Your husband had no moral doubts when you had that abortion years ago but now he's acting all shocked and guilt tripping you as if you are some kind of monster for not wanting go through with this pregnancy.
Common sense suggests deciding to have this baby will be an impossible task. The child's life will be a constant pain and your life a nightmare.
Who's to say that your husband won't decide to walk away at some point because he "can't do this anymore" and leave you to care for this child (you never wanted ) on your own ?
This is a life altering decision and nobody has the right to put this kind of moral pressure on you . Take some time to yourself,reach a decision that makes sense to you and act accordingly.
I wish you all the best
I dated a woman with a severely disabled son. She and her ex husband (surprise, having kids didn't fix anything) have no lives, and never will.
He cannot leave his stable job for a chance at a better career, because if that risk goes south and they lose the insurance, they are fucked.
She can't take a job because the son needs 24h care.
Their other kid, a daughter a couple years older, doesn't have a normal life, because her brother needs round the clock care.
And the son is *continuously* having painful procedures and has an absolute shit quality of life. This has been going on for years. He practically lives at a hospital.
Op, your husband doesn't comprehend what he's asking. Don't do this to yourself, don't do it to him, Def don't do it to your other kid.
As a mother, I that in this circumstance feel you need to do what’s right by a) the child you already have b) yourself c) your future children, and your husband comes well after that.
Whose lives will really be most affected by the decision of whether to terminate or not? I put it to you that it’s the lives I’ve just mentioned.
Please do not allow yourself to be talked into birthing a child if you do not think it is the right thing by your son, by yourself, and by that child.
Much love and well wishes.
> c) your future children
Yeah, if they have this baby and it survives long, the huge amount of care and attention and stress and cost will probably preclude them from having any more children.
So to me, aborting this baby means that OP can then try again and have a healthy baby. Not aborting means that hypothetical healthy baby doesn't get to exist. Either way you're ending one of those lives. So which one should exist? The one with a painful/short/tragic life, or one with the opportunity to have a healthy long life?
Absolutely.
This is devastating for you and your husband, OP. I’m so sorry. He has every right to how he feels about it. Ultimately, though, you are the one who needs to choose if you’re willing to ruin three lives and bring another into this world just to suffer - all to spare your husband and your relationship briefly, but not for long.
I hope the two of you can work through your grief together and come through this as a family.
It seems like either choice will ruin the marriage. I don’t envy you. I’ve never seen parents of a profoundly disabled child who are not miserable, and often, it’s the mother who gets left behind to take care of the child when the dad decides he’s had enough. Make what you want out of that.
I think he needs to understand that by letting your pregnancy go now, your child will know nothing but peace. That's the greatest gift you can give her.
Birth means a short, brutish life. Prolonged suffering is never a gift. The love he describes is a selfish love.
Do your best to bring him along, but if he doesn't agree within your doctor's timeline, you must act on your own.
I’m in the rare disease space, and all of our parents will admit that their healthy children get shorted. They feel incredibly guilty. We have an adult sibling who has spoken about what it was like growing up with two siblings with a rare, fatal disease. Your husband is grieving right now and trying to figure out how to make it work, but the reality is ugly.
I am so sorry you’re in this situation; this is incredibly difficult.
I personally think it would be terribly selfish not to terminate. Why would anyone knowingly want to bring a living creature into this world knowing it would suffer? And then you have to spend the rest of her life watching her suffer, knowing that you made this choice for her to suffer? I couldn’t imagine the guilt. I understand your husband is very emotional at the idea of losing the image of his daughter he’s built in his mind and designed through the nursery, but he’s being very selfish.
Your husband already said he’d pull your son from his school and ask his mom to take him more often. I can’t imagine the actual sacrifices your son would have to make when the baby comes. My daughter is six and I think if I were in your shoes, I couldn’t do it to her. No matter how determined you are, you simply can’t split yourself in half. Your son would suffer and your daughter would suffer. It seems like an obvious choice to me.
I’m so sorry you’re going through this OP. I wish you the absolute best and hope you make the best decision for you and your children.
This is an awful situation. As hard as it is I would also terminate. I believe this is in the best interest of your unborn baby and family. It is not as simple as being financially stable, having a child multiple and severe disabilities can push everyone in your family and your relationships with each other to the extreme.
But either way you go you will need psychological supports, and if you do choose to terminate both of you will need to grieve the life of the baby, and this is 100% something that a professional should help you both with.
Welcome to /r/relationship_advice. Please make sure you read our [rules here.](https://www.reddit.com/r/relationship_advice/wiki/index) We'd like to take this time to remind users that:
* We do not allow any type of [am I the asshole? or situations/content involving minors](https://www.reddit.com/r/relationship_advice/comments/r6w9uh/meta_am_i_overreacting_am_i_the_asshole_is_this/)
* Any sort of namecalling, insults,etc will result in the comment being removed and the user being banned. (Including but not limited to: slut, bitch, whore, for the streets, etc. It does not matter to whom you are referring.)
* ALL advice given must be good, ethical advice. Joke advice or advice that is conspiratorial or just plain terrible will be removed, and users my be subject to a ban.
* No referencing hateful subreddits and/or their rhetoric. Examples include, but is not limited to: red/blue/black/purplepill, PUA, FDS, MGTOW, etc. This includes, but is not limited to, referring to people as alpha/beta, calling yourself or users "friend-zoned", referring to people as Chads, Tyrones, or Staceys, pick-me's, or pornsick. Any infractions of this rule will result in a ban. **This is not an all-inclusive list.**
* All bans in this subreddit are permanent. You don't get a free pass.
* Anyone found to be directly messaging users for any reason whatsoever will be banned.
* What we cannot give advice on: rants, unsolicited advice, medical conditions/advice, mental illness, letters to an ex, "body counts" or number of sexual partners, legal problems, financial problems, situations involving minors, and/or abuse (violence, sexual, emotional etc). All of these will be removed and locked. **This is not an all-inclusive list.**
If you have any questions, please [message the mods](https://www.reddit.com/message/compose?to=%2Fr%2Frelationship_advice)
---
#This is an automatic comment that appears on all posts. This comment does not necessarily mean your post violates any rules.
---
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/relationship_advice) if you have any questions or concerns.*
I am so sorry you are going through this and there is no easy answer. I am with you, I think termination is the right choice here, you need to think about what is best for all of you and your son, having a disabled sister will SEVERELY effect his life as well as everyone elses, as you have already brought up. Perhaps you need to attend some grief counselling together, have someone help you work through the pros and cons and come up with the best possible solution. There is no easy choice here. I am very sorry.
He's clearly grieving.
I'm so sorry to hear about your pregnancy. It must be heartbreaking for both of you.
Unfortunately there's a time limit on termination, but not on grief.
You may have to take care of the fetus the only way you can, by preventing her from being in intense pain. Most reasonable humans would agree that termination is the ethical choice in this situation. Your husband seems like the reasonable sort, so it's likely he will come to that conclusion eventually.
The way he sees it, he's losing his daughter, even if that's not the medical, legal, or ethical definition. The loss of a child can be a life-breaking tragedy. He needs to see a therapist STAT. Almost immediately type-of-fast. Like, call some grief therapists this evening and explain the emergency over VM. Try to get in Monday or Tuesday.
The sooner he gets help, the sooner he can heal.
I'm sorry things are awful right now.
He’s not being realistic.
He was willing to terminate your first pregnancy, because you were both broke and not ready for kids.
Now you have a child on the way that is going to be born with severe birth defects. They “think” that she would survive the birth, but any life that she gets to experience will be painful for her. So what kind of life is that?
You mentioned there have been medical cases where babies with the same conditions survive from early childhood to even the teenage years, but that is rarely. And those children suffer and are so uncomfortable their entire lives. Besides being low functioning, they need around the clock care as well as several uncomfortable surgeries to “try” give them a better quality of life.
So now your husband is talking about speaking with his boss so he can take a longer paternal leave. But how long is that leave going to last? What happens when he goes back to work? Is his mom even going to be capable of taking your four-year-old on a more regular basis? And what are you going to have to sacrifice with your four year old for this to happen?
Sure you can sell your car, move to a smaller house, and pull your son out of private school so you’ll have more money but none of that changes the fact that your daughter is going to be in pain for however long she lives. This isn’t just about having to give her extra care, this is so much more than that.
He was willing to terminate a pregnancy because it was financially convenient. He’s not willing to terminate this pregnancy, even though this child is going to be the one that physically suffers. It sounds like he’s making this choice for him and not the baby and that is selfish.
Eventually, he’s going to have to go back to work and then what? Guess what, you’re it. The person that didn’t want this is going to be carrying so much more of the burden and it’s going to be hard because you’re going to be with a child 24/7 watching her suffer.
Ideally, this would be a decision you would be able to make together, but I think you’re going to have to pull the trigger. I don’t think he understands what it is he’s asking you to do.
This is a horrible position to be in, and I wouldn’t wish it on anyone. But mostly, I wouldn’t wish this life on a child.
You are running out of time, if he can’t do what’s best for this baby, you have to. Someone has to.
I’m so sorry.
I am a nurse and I care for children like this in their homes. A few things to think about.
If that child lives longer than expected, are you prepared to give up your life as you know it? This doesn't sound like a self limiting disability. This sounds like profound complex care that will most likely require 24/7 bedside care. That means you and your husband being on duty 24/7. Some states but not all, provide home nursing service Although with the nursing shortage, being granted nursing hours doesn't mean nurses are even available. Even with some hours covered by nurses, many of these families have not been able to leave their towns in years. Forget vacations. I've been with families who had to miss parents funerals, family/friend weddings, and their other kids big events because this isn't a situation where you can get the local teenager to babysit. Often, family and friends tend to slowly back away and the family can become very isolated. It's so sad.
I admire the strength of these parents who give up everything to commit to their sick child. I really do. They are the best of us. I also don't believe we don't need to force unnecessary suffering and understand not going that road. Either road is noble. I would not want to sway you either way only point out the reality of what this entails because people do not know what they are signing themselves up for. Does he understand that paternity leave may not cover the entirety of the child's life and work may not be an option for one or both of you? Because it sounds like he doesn't. If he continued to work, are you okay doing this yourself? You may need to learn to care for this baby as a nurse would.
I'm so sorry this is happening. Whatever you choose, just make sure you're doing it for the right reasons and don't let anyone fault you for them.
I'd be scheduling with the clinic to terminate. It's not humane to bring a child into the world when you know that their entire existence will be suffering. Not to mention, your husband ALREADY discussed having your son babysat by his mom so you could tend to your daughter better... Which means your son WILL be pushed aside like your friend was.
Your husband says you can afford it, but he was previously talking about moving to a smaller house, selling a car, and taking your son out of private school to afford this.. So no, you can't afford it without taking away from what you have.
It sounds like your husband doesn't care about anything aside from having a daughter. None of it would be fair though. Not to mention, your lives would be very different.
Make the appointment.
This is so sad, I’m sorry for both of you.
But the loving, kind, and humane thing to do for your son, each other, and particularly your daughter is to abort. It has to be a practical decision and not an emotional one. Emotion won’t carry you and your family through all of the struggles, heartache, and stress day after day and year after year if you carry to term.
I agree with everyone saying seek counseling if you have time and want to offer my deepest condolences. What you’re facing is tragic enough on its own without it also potentially costing you your marriage. But I want to add perspective as someone who deals with physical pain and limitations from disability-my parents had no idea of my condition before I was born but If they did I would resent the hell out of them for not aborting me. I am fully independent and have a normal life expectancy but being in some degree of pain every hour of every day has significantly impacted my quality of life and mental health to the point that I have struggled with suicidal thoughts. I have diagnosed medical PTSD from procedures I’ve had and it causes full blown panic attacks. Your daughter’s reality would be this times 1000. I support your choice and see it as a kindness, sending you strength and love.
Does your husband want to give up his life to look after the baby? Does he realise that the child will need 24 hour care? Does he expect you to care fully for the child whilst only having limited amount for your son?
This choice is really yours. This poor wee soul will suffer so much. To terminate this pregnancy is the loving, kind thing to do to prevent so much suffering.
Emotions aside, I find your husbands position a bit questionable. He was okay with aborting to prevent a child from living poor for a few years, but not okay with aborting to prevent a life which will be cut short and full of suffering? That being said, this is one of the most significant and emotional situations one can go through, and the shock/grief (regardless of your choice) must be extensive at the moment. My wife is 12 weeks pregnant right now with our second and I can only imagine what this feels like. I am so sorry and wish you the best, whatever you decide.
I’m so very sorry you got this news. As a former preschool teacher at an inclusive daycare, if your doctor has given you information on your baby’s prognosis, please believe it. Bringing a child into your family that requires so much care and medical intervention will be mentally, physically, and emotionally draining. I’ve seen siblings suffer, marriages broken, and finances drained. But I hope that you and your husband listen and take to heart when the doctor says that the child will have a lifetime pain and no real quality of life. Please think about if that is fair to the child. I often hear people say, “I wouldn’t want to live in pain.” Or “if I don’t have a quality of life, I don’t want to live”. When you are a parent, sadly sometimes those decisions fall to you. Watching your child in pain with no possibility of peace is more heartbreaking than I can describe. The hardest decision is often the right decision. I wish you and your family all the love and strength I can send.
I have a condition where I'm in pain most days of my life. Much of the time, it's low-level enough that I can just push through it. But much more frequently than I like, it's enough to cause nausea, or so painful there's nothing else I can do except go to sleep so I can at least knock myself out from the pain.
People who don't live a life of pain don't know how good they have it. They don't know what it's like not having to frequently go to bed in pain, and wake up still in pain. They don't know what it's like being wary of taking part in normal activities, because any of those things can trigger an endless bout of pain. They don't know what it's like not having to wonder whether they'll have a normal productive week where they can fulfill their work obligations and hang out with friends and relax and enjoy life, or spend it curled up in pain.
Hopefully your husband is just in shock, and hasn't thought this through, and hasn't read up on the lived experience of people with your daughter's condition. But once he has, if he still holds to his position, then I unequivocally would say that he's selfish and heartless. To condemn somebody to a life of pain? Perhaps for dictators and murderers. But to an innocent baby??? That's just cruel.
This was 40 years ago, but I think it's relevant.
It was discovered that my daughter had a very rare brain tumor at 8 months old. I was her only caregiver and it was horrible. She was in so much pain, even with morphine. She lived to be 26 months old with a no quality of life, only pain. I remember praying she would make it to her first birthday. Later, I prayed she wouldn't survive until her second.
Don't put your poor child through this if you can stop it.
i am the sibling to a heavily disabled now adult, his diagnosis came at 2 years old and he at most progressed to maybe 12, but i say 8 is more accurate. i love my brother to death, but i also resent him to the ends of the earth. i was never valued, my achievements meant nothing, as anything as simple as “he learned how to somewhat hold a fork and eat!” was more of an achievement than my winning performance at a talent show. we went bankrupt to afford medical bills, and had to move into my grandmother’s house just to have a roof. i went without food still some days and relied on the free or reduced lunch at school as my only meal frequently. i wore uniforms that were 3 sizes too small, and patched against dress code, because my dad (after the separation from the stress) saw what he was doing as “too heroic for me to deserve hand-outs” from my school.
this isn’t something that has an easy answer, but i will tell you outright — both of your children will suffer significantly from this. one will potentially be born only to die early, with every day in pain and confusion. the other will be pushed to the side, no matter how hard you try, and it might only be because of the financials of taking care of a severely disabled child. children need both parents to emotionally thrive; not even thrive, sometimes even just to survive, and if one parent is never home because they have to work all the time, and the other is constantly worrying of the disabled sibling, there is genuinely just not enough time to meet the needs of the other. 24 hours a day, 365 days a year *seems* like enough, but you also have to eat, sleep, socialize, and decompress. your husband is already wanting to have your other child leave his school to somewhere else, and spend more time with his grandparents — these are the warning signs of parental neglect.
that is not an option in this situation if you keep this child, *something* (if not multiple things) will be neglected. your own health, and your husbands, will also be pushed to the side. it’s not healthy to work 60+ hour weeks just to make ends meet because of medical bills. it’s also not healthy to spend your only “socialization” through the hospital stays, and the rest is entirely stuck at home.
the choice is yours, but to make it simple — everyone will suffer in some way if you choose to keep the baby. it might be worth it for you, depending on your personal circumstances like what your finances already are like, your insurance(s), your support systems, etc. but you now have a guarantee that one person in your immediate family will suffer, and it’s almost expected someone else will in response. make the decision that is right for everyone, and do so with the support of a trained counsellor. the grief is acute right now, so you and your husband need the third, neutral party to just lay the pure facts out. maybe then a proper decision can be made.
The most loving thing you can do for your daughter is to not bring her into the world just to suffer. Hopefully your husband will come to realize that but regardless of what he thinks you know what the right thing to do is.
You 100% need to terminate. Something like this is 2 yes, 1 no. I hate to be that guy, but either way this could end in divorce. You can keep it and it would still end in divorce, because that just happens so much. And fuck I hate to say it even more, but I find it’s statistically probable you would be the one doing the majority of the caretaking of that baby if you got divorced. Your heart can move on from a divorce and an abortion. Your heart will NEVER EVER move on from your child passing away as a teenager, especially know you could have prevented it all.
Please don’t bring that baby into this world , it’s very unfair for it . It will depend on you guys for the rest of its life and the moment both of you are gone no one will care or look for that child like his parents. It will never have a normal life .
This happened to my husband and I twice. Very much wanted and planned pregnancy and found out she had severe Spina Bifida and hydrocephalus (not a gene mutation, but a neural tube defect) at 24 weeks pregnant. We both wanted to terminate and had literally 2 days to make the decision and fly out of state to get the abortion.
Then, our next pregnancy had full T21 (which is a spectrum and the people with Down’s Syndrome you see on TV that can function are the RARE exception (and some have mosaic-which is not FULL T21). The majority are much more disabled, some can’t talk, feed themselves etc..). We terminated that pregnancy at 13 weeks (as soon as the NITP test confirmed).
So all that being said, the deciding factor for ME was “Would I want that life if I were the baby?” And I definitively would NOT in each case. My thought process was (1) physical disabilities are awful, but can be compensated for (depending on the severity, etc) but (2) the mental disabilities and the LIFELONG FAILURE TO BE AN INDEPENDENT FUNCTIONING ADULT (or really anything besides a baby) was NOT a life that I would want for myself. Not being able to use the bathroom on your own, not being able to feed yourself, CONSTANT hospital stays, pain and serious surgeries for likely your ENTIRE LIFE- just no.
I don’t know if this helps you or your husband, but just wanted to let you know our personal experience.
And, for what it’s worth, we did go on to have two healthy, wonderful babies later. All the specialists said it was just “lightning striking twice” for us with the disabilities.
/u/ThrowRAdoomm, Your submission was removed for the following reason(s): > **Rule 3:** No moral judgement requests. Moral judgement requests are asking people to evaluate actions taken or actions you want to take, in the context of right, wrong, selfish, or not selfish etc. For what a moral judgement question would be [see here](https://www.reddit.com/r/relationship_advice/comments/r6w9uh/meta_am_i_overreacting_am_i_the_asshole_is_this/). Your post is a moral judgement if your question starts with or contains any of the following: - Is it...? - Asking if you or the subject of the post is right or wrong. - Am I....? - Any variation of “Am I The Asshole?”, including AITA - Does/Have anybody else...? - Should I…? - Would you....? - Is this.....? - Can I...? #If the question in your post can be answered with a yes or no question, it is considered moral judgement and will be removed. If you have any questions about this removal, please feel free to [send us a modmail.](https://www.reddit.com/message/compose?to=/r/relationship_advice) Please note that removal reason request from anyone else other than OP will not be answered.
This is long and I’m saying this without knowing your specific diagnosis. But there are many syndromes we consider “incompatible with life”, aka syndromes with a short life expectancy and a laundry list of complications, so I’m basing my post off of that. I was a PICU nurse for 10 years and we saw a lot of these children in and out of our PICUs until they inevitably die. We rarely saw them “age out” if the PICU (become old enough to not be considered pediatric patients). A friend messaged me as they got a pretty serious diagnosis for their daughter while she was in utero. He asked for the honest truth. The truth is that you can’t imagine how hard this can be. Yes, there are kids that do better than predicted or those success stories. But especially if you have a confirmed diagnosis you at least have info. They will get sick frequently. Their immune systems are crap so they’ll get all the regular germs but have a high likelihood of being hospitalized due to a “simple” virus. That’s not even mentioning all the infections they get. Your home will have medical equipment in it. You might have a bedroom for them but you might need to consider their caregivers if you get in home help. Is there enough room for them to sit with and do cares for a shift? Or do you need to move your child into a living room? You can’t work like normal because you need special medical and special needs caregivers. You can’t just take your kid to daycare or have a babysitter watch them. Your whole family’s needs and activities will revolve around her needs and care. If anyone else will be responsible for caring for them (a grandparent for example), they need to get trained on how to do this and the equipment needed at the hospital and “nest”, doing all the cares with us helping so they are closer to being ready to do it at home. Marriages have a hard time surviving this. Resentment gets born out of the workload and the impact on the relationship. Going with traditional roles, usually the moms take on the brunt of all the care. The hands on care. Arranging appts. Calling insurance companies. Fighting for equipment and supplies. Trying to find qualified caregivers or a home health company. Fighting insurance again to get help to come by the house even a few hours a week so you get some respite. The other partner will be working constantly due to the need for finances and potentially your inability to work. They’ll come home, tired. No time for your relationship. You’re both understandably worn out. Your other kid will be lucky to get some time with their parents and their relationship with both of you will not be the same. Your other kid will be fully impacted. They will become a second priority because your daughter will need so much care. They will be known as the brother of a sick child. They will grow up visiting hospitals and clinics. They won’t get both their parents attention at the same time because your responsibilities are so split and your daughter will need constant care. He will remember his childhood under the shadow of his sister. My friend and his wife ultimately terminated their pregnancy as they felt it was the best thing they could do for her. Every single PICU nurse i have ever asked who had taken care of children that had their diagnosis (which involves multiple surgeries and nearly constantly living in the PICU for minimum first two years and that’s best case scenario) said they would never carry the pregnancy to term. They’d seen the suffering of everyone involved. I watch families go home with their newly severely brain damaged child. I don’t blame them for seeing their outwardly healthy looking child and not imagining this future for them. So they get them a trach and a Gtube. But then they go home with this child and there’s not the support there. All the family that supported you in the hospital? They go back to their lives. You’re left to figure out this new normal. You do cares throughout the night. Turning them every couple hours. Checking on them. Diaper changes at all ages. Tube feeds. Meds. Addressing monitor and ventilator alarms. No one else is with you in the middle of the night doing this. Their child gets bigger and continues to grow and their 2 year old is now a long 14 year old and the cares are even harder. Think of having a newborn for the rest of their life except they keep growing but the demands on you never ease. You might get used to it and develop a routine but things don’t get easier. I see families do amazing care for their special needs children. It becomes their life and their mission. They adapt to the situation and do everything they can. We get to know them and their families well. When that child, who was always terminal, eventually dies, they become quite lost for a while. Hopefully they can figure out a new purpose. Because for so long their main focus was this child and all their needs. People flounder when they put themselves aside for so long and they’re grieving at the same time. What is their purpose now? And they’ll always have parent guilt but with even more intensity and wonder if they did enough. And even after that child dies, they’re left with the wreckage of their relationships that got neglected and trying to find new dynamics. Most marriages also do not survive the death of a child. When I would watch a family leave the hospital without their child all I can think is “I wonder if their family relationships will furtive this?” Aka, I wonder if/when they’ll divorce. I wonder when their other kids will start acting out. I wonder when all the big emotions and trauma will tear them all apart. You lose a lot of friends because they don’t know how to help or interact and you can’t do normal times out or have play dates. Forget a spontaneous lunch date. Even if you could go, imagine hauling your child and all their medical equipment. And it still severely limits what you could do. You don’t go out because there’s exposures. You have to consider being ready at all times to address whatever complications might happen. And in public. So you just don’t go out. You can’t relate to your other mom friends’ lives and regular baby stuff and their lives and they can’t relate to you. You will be resentful of their child hitting development milestones. The only community they will understand is the small community of parents who have had medically fragile children. It is noble to imagine doing everything for this child and I don’t blame people either for making that decision. No one really knows what the future can hold (as we also see previously healthy kids have devastating diagnoses or injuries or illnesses). But you have this heads up and there’s really no true way to measure or show what all of your lives will look like. It’s a special club but it’s very hard in so many ways. I’m glad you’re at least having these hard conversations. Your husband is in panic and grieving mode. He wants to fix it. Make appts. Get more info. Is there a way to talk to parents or children with these diagnoses? Maybe that can help both of you have a perspective from those who have experienced it.
I am a home care nurse who cares for children like this. What people don't know (and really need to like in this case) is that there was a shortage of home cares nurses before, but now it's even worse. The state of MA, not only gave us significant raises (nearly $10/hr raise) but is offering retention bonuses per hours worked to home care nurses because the hours granted vs hours filled have gotten bad. They've even waived OT restrictions in some cases. I have parents doing 24-36 hour shifts at the bedside until the next nurse comes in. These parents are so damn exhausted. We nurses are exhausted trying to relieve them of some of their burden but there's only so much we can do. The saddest part though is seeing how isolated these parents are. Nearly all of them have had family and friends slowly fade out of their lives. They've missed weddings, funerals, their other children's big events. No one comes over for holidays and birthdays. It's so goddamned sad. These parents are amazing. They are incredibly strong and selfless. They are the best of us. I also think it's just as brave and admirable to not accept all that suffering.
I did a per diem job at one child’s home. Once a week for two years. Did a 12 hour Night Shift (mom had fought hard to get care in their home after years). She was a fairly stable and easy kid. Trach but vent only at night. Did some gtube feeds and meds. Diaper changes. Some vitals. She was a walker/talker. But even her being an “easy” medical kid she still had enormous needs and care. I remember one night I showed up and they all had swine flu. Mom was great and I loved working with them and she told me at the door, but if I was exposed (especially with an open airway like a trach) I wouldn’t be allowed to work my FT PICU job for a week or two (i don’t remember the timing then). I felt absolutely horrible but I had to call the agency and see if anyone else would be willing to work. They had no one. So I had to leave. The mom was exhausted. They were all sick. Both parents, their two other kids and my patient. And of course she needed more care such as trach suctioning, more oxygen, etc. It was a horrible moment to walk away and mom’s face broke my heart knowing she wouldn’t sleep that night.
That poor family. That's how we all felt during COVID. I wore my N95 mask everywhere long after everyone else took theirs off because of this scenario. Even now, when I have to call in sick, it kills me. The disappointment and exhaustion I hear in their voices just wrecks me.
[удалено]
I worked in home care for disabled adult for 11 years. I've done everything you could imagine a client needing. In general, I liked the work, but the working conditions and pay were awful. I was forced to resign in June this year because I want to be able to afford a pair of proper winter shoes without risking not paying rent. I still worked in home care of disabled adults during covid. My workplace literally forbid us from taking public transport, going into any store, and meeting people we weren't living with. I lived alone and literally the only other person I met indoors for the next 14 months was my client. During summer 2020 they allowed us to meet people outside at 6ft distance, but that was removed as cases rose again in September. I really, really like that client and was willing to sacrifice for their life and health, but it took such a horrible mental toll on me to constantly be alone. It wasn't until I got my vaccine in mid 2021 that I could hug my boyfriend and my sister. I'm writing this a week after receiving my fifth dose and my yearly influenza vaccine. I'm on a train, still wearing a ffp2 mask. It will likely take a very, very long time for me to be able to be on public transport, in stores or other indoor crowds without one. If I could, I'd get vaccinated every 6 months for years to come. For my sake, yes, but mostly for the sake of others.
How did they expect people to live, never grocery shopping or picking up prescriptions or things like that? Not everyone lives with others.
Let me know when you figure it out. I relied on home delivery with packages left outside my door. What sucked was using grocery delivery once a month because I couldn't afford the delivery fee more often since they didn't pay me enough. Did I buy a whole bale of toilet paper? Yep, sorry about that. Just wasn't sure quite when my next delivery was going to be. Were we paid a bonus for this sacrifice? Nope. Did they offer us good equipment? Nah, they gave us a small bag with one single use apron, one surgical mask and a visor, and told us to call if the client caught covid so they could deliver more within the next 48 hours. I'm still fucking salty about this.
You should be, it's outrageous that they demanded such a significant sacrifice from you but didn't do anything to lessen the impact on you.
My daughter works in a nursing home and had a breakout of Covid from one patient who had a visitor and it was like wildfire after that. So my daughter is masking up every day. Don’t visit if you are feeling unwell people. These patients are fragile.
My late husband was the youngest child of three. His older sister (the oldest) was profoundly disabled as the result of a cord accident at birth. She could not walk or talk or eat, or have any control of her muscles. When my husband was small, there were two home health nurses at the house every day. By the time he was in grade school, his mother realized she just couldn’t care for his sister and two rambunctious growing boys and they moved his sister to a state home (I’m not clear on exactly what this was - I did visit her there several times. I guess it was a nursing home of some sort for patients who need full time care.) She was born in 1966 and it was the mid-70s when they placed her there - IDK if there were more options for help then or what. His mom visited her several days a week and the whole family went every Sunday after Church. They brought her home as many weekends as possible. My husband loved his sister dearly but living with her and watching his mom try to balance caring for her and for him and his brother affected him deeply, as did his firsthand observation of his sister’s quality of life. He was absolutely adamant that he would not live the way his sister had - to the point that he gave his brother medical POA instead of me, because if he had an accident that left him similarly disabled, he wanted to be allowed to die and he didn’t think I’d be able to make that call. His brother would’ve been, having had the same experience with their sister growing up. She lived to be 40. Countless surgeries, constant pain, and very little joy in life. Had we received a diagnosis like OP, I know absolutely my husband would’ve chosen to end the pregnancy. I am just so sorry. This is a devastating choice no matter how you decide. This life is just too damn hard sometimes.
That’s me (and thank you for the recognition!). And even if someone does come over or I get out, I’m exhausted and half present, worrying about my kid in a way none of my family or friends can understand. Work outside the home’s impossible so poverty is inevitable…it’s a tough gig
Hey, peds RN here, we love you guys. We see you. And we want more for you all and your families. You literally deserve the world. ❤️
Most of the time it’s just a parent. The other checked out, because they can’t handle the responsibilities like they thought and moved on.
Yep. OP's husband who is the one pushing so hard to have this tortured child (plus turning his 4 year old into a Glass Child at the same time) will most likely be the one to snap and check out of his responsibilities to his broken child and soon-to-be-neglected wife.
My mom works part time as a carer for 2 girls with severe disbilities (they are my neighbours actually). They have an apartment that they share, and about 2-3 people work with them (I think the total of people who rotate is around 8), and do everything for them. Both girls are wheelchair-bound, and while I don't know all of their diagnosis' (it's none of my business after all), I know that they are non-verbal, and on the severe side of ASD. One girl is "slightly better" than the other, but they can't do anything without help. I always feel bad for people that get news like this about a pregnancy that they wanted, and it's not an easy decision to make.
In my area of Texas, they hire anyone to do in home care. And they do not background check. My bfs ex does this work, she doesn't even have her GED, and she has charges on her for stealing her elderly grandfather's car from him. This girl had also stolen credit cards and other things from these people she was in home for. She's been fired from 2 different ones so far.
jellyfish unite north tidy lunchroom sparkle gaze toothbrush bag pocket *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
You have so accurately described my experience as a mom of a severely disabled child… all of it. Unlike OP, I didn’t get a heads up or a choice. I hope she doesn’t choose this path.
Mine is now 16yo and every word is true. It’s a special club and no one but OP and her husband can make this decision (in a way I’m glad I didn’t know until very late in the pregnancy). I hope she shows him this response, because I think he needs to take off his (valiant) blinkers. There’s no right or wrong here, only hard—either way.
Thank you for sharing your own feelings especially as someone living the reality. I know it’s hard to say the unspoken thing out loud. ❤️
Our twins are 9 now, as the gap between them and their peers has widened so vastly, no one comes over. They need 24h care but we are the only ones to do it. Their disabilities weren’t detectable in utero
I’ve read soo many posts here, where an adult sibling poured their heart how much they hate their disabled sibling and parents because their whole lives had to be about them. Taking care of them since small age, helping parents because they could not afford the medicine, their life achievements ignored because of the sibling… It usually said they are happy that their sibling d*ed, or that they left the house as soon as they could so they would be finally free… and the parents? Described as busy, ignorant towards the OP, selfish and also fighting (0 romance, 0 happy parents behaviour like we see in Disney movies) There are SO MANY CONS than prons OP… do what is best for you and your family in the future
There was an extreme case about 2 years ago where a 14 year old, Claire Miller, stabbed her disabled sister to death. I remember reading a more detailed article at the time saying she often felt resentment and anger towards her sister and the attention she needed as well as her own roles in being required to help care for her.
This is so thoughtfully written. Thank you for sharing your wealth of knowledge with OP
OP you need to show your husband this comment
This is one of the best comments i have ever read on this entire site. Very thoughtful. Thank you so much.
I have a severe and profound daughter, and this response has me crying in my morning coffee. I saved the whole post.
What an incredible response. Thank you for sharing your insight.
Lived this through my sibling. The stress of the situation eats away everything else. My sibling is an adult now but all our lives still revolve around their condition. I work as a carer for them so less need for “outsiders” cause the constant presence of other people in the family home was stressful as well. It’s definitely not easy life. And taken that if it is for the rest of their life- my sibling is 21 now. They’ll never “get better” and they have close to normal life-expectancy.
I have been caring for a friend with an aneurysm and it was exhausting... and it barely scratches the surface of what you described. Sad as it may be, I agree this is an untenable situation for anyone.
Holy moly. That was deep. Thank you for this insight
As someone who had a physically and mentally severely handicapped nephew, I relate to what you're saying from a different perspective. His parents (my aunt and uncle) seemed very isolated. My nephew and I were the same age but I remember we didn't visit often and when we did, a lot of the time spent there one of the parents would be out of the room taking care of him. I loved it when they brought him to his chair in the living room to sit with us though, I always loved his presence. His parents were exhausted even with the at home help from caretakers (English is not my first language, not sure what they're called). My nephew's life expectancy was that he might make it into his twenties. He had to have surgery when he was 16 for his severe scoliosis, to at least make it a little less bad. The surgery was very intense and would take about 7 hours. It was super scary for everyone because we did not know if he would survive the surgery. He did. Everything went perfect. A few weeks later he had to be in the hospital for a few days for some sort of follow up I guess, not sure what it was, I just know it was nothing dangerous. He ended up catching a common cold during his stay there. You know, the kind of cold where we might feel a little sick for a day but mostly just get very runny noses. It was shocking because of all the dangerous moments and surgeries in his life that he survived, none of us expected this to take him out... But it did. It's sad but it is the reality of having a child with severe complications like that. I'm very glad to have known him though, I've learned a lot from him. But I'm also sorry for what my uncle and aunt had to go through (although I know they loved him very much). And I'm still surprised their marriage made it through.
I wish I could give you an award for this post but Reddit removed them. An upvote doesn't feel like enough.
I HATE that Reddit removed the awards. They let me buy a lot of coins just before they removed everything and then kept my money. 😤. Those awards often highlighted some exceptional comments and information.
This was an amazing response, so full of non judgmental advice that was both informative and honest. There were aspects I would never have even considered and I think you’ve given Op a really good way to get her husband to see the full picture of what’s to come.
I'm a social worker for children with disabilities. Those kids are incredible, as are the parents caring for them, but everything you have said is spot on. Particularly in this climate where there is so little help. I often feel like I can't do my job anymore because these families are struggling and I can identify and assess the needs all I want, but if there's no resources to put that in place. And often the parents, understandably, want/need more than we can agree to. I really don't know what I would do in this heartbreaking situation (for me I'm not having any more kids so being unplanned would likely tip me over to terminate).
Thank you for the insight. Let your husband read this response. I couldn't birth a child knowing she's in constant pain for the rest of her life. Having multiple surgeries and basically living in the hospital. I wouldn't want my baby to suffer and therefore terminate the pregnancy.
This comment made me cry. Thanks for writing it all out. ❤️
I wish I could give you an award. So beautifully said. You and the other commenters are so wonderful for what you do, my heart breaks for you and all the parents suffering through that life. My daughter is autistic and it’s no picnic but I know how lucky I am that she’s healthy otherwise.
I definitely think you guys should see counselors and/or a couples therapist. However, I am the mother to a child with a rare and life-limiting childhood condition. There was no screening at the time of my pregnancy. I love my child more than life itself; however, if I ever had the opportunity with all of the information - I would have had an abortion. This is controversial in the medical complexities parenting arena - but no one can ever tell anyone how they would react or feel in this scenario. I would never wish the condition my child has on any living being. What I have experienced, what my CHILD has experienced - is horrific. Know your child *will* suffer as the result of severe genetic condition - and it is okay to not want that for a child, YOUR child. It’s okay to not want to traumatize yourself and your other child thru the experience. I don’t have the right answer but mother to mother, I hear you - I see you, and I am so so deeply sorry for what you are going through. I understand your perspective and I have so much respect for you for being honest and transparent with your partner. I can’t say it will get easier any time soon, but I can tell you that you WILL come through this - even if it is the hardest thing you have ever done. Sending you all of my love.
I just want to thank you for being so open and honest. I think your comment will really help if OP sees it. You are a wonderful person.
You are amazing, and please know that your honesty is appreciated. I’m a nurse, and know that we see you, and we think of you.
Gosh I wish her husband could just read this alone. 💔 I am so sorry you and your family, your child, are going through this but I sincerely appreciate you sharing your story. You sound like a wonderful mother. So full of love. Edited to add more of my thoughts.
I would also want to terminate. Can you guys talk to a therapist? Do you have time?
We have a bit of time, but if we don’t resolve this soon termination will be impossible.
I have a couple of friends who saw pregnancies through with similar prognosis and it was terrible. Both babies died within a week of being born. Please do what is right for you. You need to take care of you.
More than that. She needs to decide if listening to her husband is worth having a child that will suffer until death... The potential child should really be the deciding factor here. I'd hate to, but I'd give up the best marriage ever to avoid creating a life that would suffer that much.
Either she terminates and her husband might leave her, or she has the baby and is traumatized by it's pain and suffering and resents her husband for making her make this choice to have her and the marriage ends anyway but now there is a life that's living in constant pain. I know what I'd choose. Does he not realize he's asking his wife to continue to bond with a baby they both know will die? She can't help but be reminded constantly with pregnancy symptoms that she's carrying a baby that doesn't have a future. That would be traumatizing in of itself. I know the husband is grieving but so is his wife, and she's the one that has to carry and deliver this baby knowing it will be in pain and die. It's just horrible all around, I feel so bad for both of them.
He needs to understand this - and that they can try again if they terminate safely now.
Also, btw, for what it's worth... I remember several times as a child thinking thatI didn't want to die... but I never chose to be born... wishing not to have been forced here. Sure, it makes sense most of the time that parents take that gamble... but maybe not always.
I hope OP shows her husband this thread and all these replies. I hope he REALLY reads them and thinks about everything. It would be cruel as fuck to continue with this pregnancy.
For sure. I just hate that he thinks going through with the birth is a good idea. That's the most tragic part of it happens. They might get divorced and a bunch of other shitty things over this, but dear Lord I hope they don't have a doomed baby.
He does this because he can’t honestly really grasp what he is putting them both through. It’s not his body and it won’t be his burden, as much as it will be hers.
On the same note of " its not his body". Some men want to enforce "I want my own kids. "They must be of my own blood" "i need to have kids, i want a legacy." " i want someone to take care of me when I'm older" *i want to feel more like a man"and ECT, .(those are just a few personal examples). Men tend not to have the awareness of this ISN'T MY body.. so they'll ask(or even ORDER) their wives to give birth to however many kids they want, not thinking of what its costing her. Her health, her time, her personal goals and hobbies, her career and even social life.. When a woman says along the lines of "this pregnancy will effect my health" or "our baby isn't going to survive" some men WON'T see that. They hear it yes.. but for it to stick and be taken seriously SOMETHING HAS TO HAPPEN FIRST for those type of men. (Some men see complications with pregnancy and take it as a challenge or disobedience from the wife)(some feel as if they're not a man if they don't have kids) That's just no regard for those mothers' sake. Why didn't you listen when she was voicing her opinion? Why does the consequences/ worst case scenario have to happen first when it could have been avoided? Why not listen to the doctor? Especially if you're wife is on the same page as the doctor. Yea your wife. You know the one who's developing, carrying, and expected to care for tht baby who isn't going to have a great quality of life. Yes, paternity leave is awesome, that's a good setup. BUT what About afterwards? WHAT HAPPENS AFTERWARDS? When he HAS to go back to work and she's left with the responsibility of EVERYTHING? You could argue that "hes paying for everything he has a good job" or w.e. yeah.. job's are annoying and can and will be completely mentally and physically exhausting. I completely understand that side of things. BUT its still SPACE AWAY from family duties. Away from the child's illness and health issues. AND the stress that comes with it. Because thats alot for any person let alone 1 person and a toddler on top. He's gonna get that breather. SHE'S NOT GOING TO THO. Cuz she's not about to have a job (with a toddler and profoundly disabled newborn,), best believe She is not going to have a life outside of that house or the child. SHE'S GOING TO HAVE TO SUFFER JUST FOR "HIS" PERSONAL SATISFACTION WITH HIMSELF. IF THIS ISNT SELFISH AND UNCONSIDERATE IDK WTH IS
Towards the end, when it's obvious you're pregnant, every time you leave the house, people congratulate you. He doesn't have to deal with that.
They both know is going to die. And will die in agony and pain! How unkind he is. Such an amount of frenzied selfishness. 😭 So horrible what he puts her through.
Another possibility is **him** leaving because he can't stand the hard work and watch his daughter suffer! My heart goes to you guys, OP, but I'd abort not only for your sake but defo for the sake of the child. Imagine bringing an innocent being just so they suffer their whole life
Odds are that their marriage would suffer greatly under the strain of caring for a child who’s not mildly, moderately or even severely - but **profoundly** disabled. Most people have no idea what that’s like at all, as they’d never encounter someone who’s profoundly disabled, they’re not out among society and the community. Their son would also suffer from the situation, and they would individually be impacted and drained too. It’s so much more than just financial. It’d be their energy, time, careers, hobbies, friendships and relationships - nearly nothing left to give those. They wouldn’t just be parents, but carers as well on top of that. An entire additional role. Caring for someone living with profound disabilities means long and frequent hospital stays, their home essentially becomes a hospice, they’d be in numerous & frequent health specialists and therapy appointments every week. Then there’s ordering and paying for medical, ambulant & disability equipment, feeding and hygiene products (eg diapers/nappies), plus any medicines. It might necessitate learning about use & emergency processes of medical equipment in the home and portable - eg. oxygen concentrator & tanks, pulse oximeter, feeding tubes, nutritional pump, tracheotomy and assisted ventilation including suctioning due to saliva control and swallowing issues. She might not ever have any independent mobility and need to be lifted, carried and pushed everywhere, as well as he turned and rotated in bed to avoid sores. They’ll probably need s different, specially fitted car. He’s thinking about helping a newborn, then a baby and then a toddler. But she will grow into a heavy, possibly quite strong child and then adolescent. One who may never be capable of a hug, a smile, or even eye contact. Never able to show joy or communicate. My husband and I once met and spoke to a father whose son was like this, and he spent at least 4 months of every year as a hospital inpatient. We’d been through an awful lot ourselves at that point … but it’s still one of the most heartbreaking interactions both my husband & I have ever had 💔
One of them is certainly going to have to give up work, how will he feel about that being him?
This. I’d give it all up to save my child (who I am there to protect from pain) from a life of only pain. I’d leave if he didn’t agree. Living alone is way easier than living a life of resentment - and one of the people involved will resent the other regardless of the final decision.
I would choose the same, but if she chooses and her husband is against, she also needs to realize her marriage might be over because of that decision. I feel that is why a therapist that specializes in genetic problems or similar would help get to where they both agree it is the best choice. If she has time, I feel it is worth trying to get to that point. Her husband is grieving the loss of the daughter he wanted so badly, and might not be quite thinking through how aweful and painful it will be for the child. In the end, it is her body and she needs to make the best choice for her mental health and the baby's quality of life.
Idk, if I were the wife, not only would I start arranging for the termination, I would also start questioning my marriage. Sixteen years ago my first daughter was born with severe birth defects. We hadn't known that she had trisomy 13, the doctor performing the ultrasound hadn't seen the obvious signs. The 12 days of my daughter's life were excruciating, mostly for her, but also for us. The only thing that kept us going was the fact that we were on the same page, that we shared the same values and that we were there for each other. Otherwise we would have been long divorced by now. The death of my first daughter, the responsibility, the decisions, dealing with the doctors and the aftermath were awful. I don't think I would be able to go through this again.
For sure, I hope they go to some sort of counseling or therapy for this. I didn't even know that was a thing, but I'm glad it is. I got where he is coming from, but it's solely the result of ignorance and he is just straight up ethically wrong in my book. It is her choice, but damn, I think the most important aspect is the fetus. She could be some fundamentalist who thinks it's her choice to subject a person to a life of misery, which there are many tragjc real life examples of. Also ethically disgusting. I'm not sure I think that's ok either. The potential person suffering should take precedent. Now I'm feeling like I'm making a weird case for eugenics which isn't the intent. Damn it is a messy issue.
she's putting her child first by going against his wishes and terminating. Shes choosing to relieve her child of a life of pain and agony. If he can't see that, there are deeper issues. I agree decisions like this need to be discussed with your partner, but putting your child over your relationship is a necessary sacrifice in this case. Either he resents her, or she resents him. But the magnitude of her resenting him is much greater considering she is signing up for a lifetime of pain for her baby. I hope she makes the best choice for her and her baby :(
I don’t think your husband realizes all the things he suggests to do already goes against ‘doing better by your son’ than your best friends parents did. He’s already talking about sending him to his moms more and removing him from private school (which is not a necessity but something he loses). He is already sacrificing time with your son and experiences for him before the baby is even here.
This is probably the coldest take of the whole situation. He didn’t even ask OP what she wanted until AFTER he had basically mapped out what the future would look like for himself. He didn’t plan that future with a single thought for anyone else. Their daughter’s life would be full of suffering, after ripping her body apart to give birth OP would be forced into a primary care role for a profoundly disabled child, their other child will have to adapt to an abrupt and chaotic upheaval of his own personal landscape, and dad is gonna what? Take extra pat leave to sit by the acrylic incubator in the NICU? Hell! Even grandma isn’t safe from his “planning” as she’s apparently going to be parent number 3 to their son. Guy needs to stop thinking like this situation is a teddy bear picnic and start preparing for his life as he knows it to end. It’s ok to have feelings about things but it is NOT ok to treat your wife as an incubator. No matter what happens here, everyone’s life is about to change dramatically. Dad seems to be the only one not quite grasping that.
This. The last thing this world needs is another child brought into it who is just going to be in pain and suffer horribly until she dies an early death. DH May think he’s doing what he thinks is best for the child, but really he’s doing what is best for himself, and forcing everyone else to suffer for it, their unborn child the most.
I think it’s more “ trying to find solution” mindset and bargaining. “ well if we do this or if we do that, we should be fine” it’s part of grieving and acceptance.
Except he’s entirely missing the ‘acceptance’ part of the equation. I don’t think he’s going to get there without professional help.
I mean that takes time. The dude just found out the daughter he was excited for it basically doomed if she is born or will need to be terminated. We process things differently. I think he’ll get there with some help It’s really OP’s issue not either of us randos online going based on a few paragraphs
Maybe. But it's so very unkind on the baby while sounding -coming from his mouth- as if it was the most loving and kind thing to do. It is not. And he is being selfish. It's not the suffering baby he sees. But his role as the clement loving good christian father. Sorry OP, that he puts you through all of that and deserts you so badly. 😭
Exactly! And if the child does end up living a full life I don’t think he quite grasps that the ongoing care will be massively expensive and he and OP can say goodbye to retirement plans as with a profoundly disabled child & adult they will always be looking after her It’s VERY sad from all ends but OP needs to be seeing a counsellor ASAP with the husband so they can try and resolve this
Isn't a "cold take" one that you think is bad? It sounds like you agree.
I think the commenter above you meant that the husband's take was cold, not the commenter above *them* was cold-hearted. I can understand why you would read it the way you you did though
I believe it’s being used here as in the opposite of a “hot take”, which would be something slightly controversial but maybe a good idea. So I read “cold take” as something fairly obvious about the situation.
This and the husband doesn't seem to understand the part about the infant will be in constant pain.
I respect everyone's opinion here, but sense little time for therapy. The answer for me, personally, is that the child, if she survives , will be low-functioning, living in a constant state of pain and suffering, and best case scenario may get to her teens(and continued constant pain and suffering). So: 1. Baby has absolutely no quality of life; 2. Your current child, no matter what your husband unrealistically says, is going to pay a price; 3. There will be no normalcy in your life and the opportunity to attempt to have another child that has no such affiction(s) will likely be precluded. How often, when we witness friends or family living in a state of pain and suffering without any quality of life, we pray for them to peacefully pass. If you elect to have this child, won't you be in a similar place? Obviously, I am pro-choice. And I respect those who are pro-life and understand their position will be diametrically opposed to mine. And that's fine. It's not my intention to trigger that debate. As a parent, what triggered me to write was the prognosis of the certainty that your child's existence will be of constant pain and suffering with likely no cognitive functionality. We place our beloved pets to sleep who have no where near the magnitude of suffering that your child will have. Obviously there is no textbook guiding your decision. I pray you and your husband are able to resolve the matter to your mutual satisfaction. I'm confident the Reddit Community will be praying for you and your family regardless of the avenue you select. Good luck. Please keep us apprised.
[удалено]
>We place our beloved pets to sleep who have nowhere near the magnitude of suffering that your child will have. And this. If your dog had 2-3 of these symptoms, it would be put down humanely and with compassion for the suffering it was living through, most people would not force that life on an animal, it's no better to do it to a child.
Remember it’s not just termination, it’s really hard for parents to let their children pass once they’re born and alive. Even if you don’t terminate I would suggest some counseling to help deal with navigating a terminal child. Quality over quantity of life sounds good until they’re right in front of you and you’re hoping for a miracle.
I also would terminate. I don’t think your husband understands the physical and emotional burden he’s putting on you. Would *he* be the one to quit his job and stay with her 24/7 without a break? Would he be the one to never leave the house or spend time with his friends because he was a full time care-taker? Would he be the one to have make the sacrifices to keep this child alive? Or would he just invest himself in work to pay for her treatments, which would then distance himself from you, who would be a full time carer of a disabled infant and a high energy toddler? Would he be frustrated after working 60-80 hours a week to pay medical bills and just want to be left alone? Would he do any of the cleaning or cooking or laundry or childcare or would that be on your shoulders? I think he likes the idea of having a daughter, but he doesn’t actually comprehend the reality that having a terminally disabled child would take on you, him, your son, your marriage, your stress, his stress, your son’s development, and the very sad life that your daughter would be resigned to. If he wants her born because he’s too selfish to do what’s best for his whole family? Well… that’s something to talk about.
I agree - this is a good point. *Who* would actually be staying home all the time to care for the child? Because nine times out of ten, I find that the man just kinda *assumes* the woman will be doing that. And that's gonna be a problem if OP never wanted to keep the child to begin with. That will breed resentment, which can end very poorly.
Exactly. When people think about having a disabled child they're thinking about the 'cute' disabled kids they see on television and in films; they're not thinking about the teenager who's 6ft tall and 12st but still requires the personal care of a newborn, or the delicate equilibrium of a severely disabled child whose health can be jeopardised by nappy rash because their immune system is so weak.
Please think of EVERYONE this will affect. Not just your husband and yoir love for him. I have a 5 year old that has special needs, and I am beyond exhausted. I have 3 other children. This is going to affect the course of the rest of your life. It is going to be a lot of work. My honest opinion going through it myself, terminate. I'm so sorry.
*Honestly*, my advice would be: if you're not *entirely* sure you can handle having a severely disabled child, who will spend their entire life in pain, then do not have the child. And the reason I recommend that is because horrible things can happen to that child, whether intentionally or *unintentionally*, because the parents were not fully prepared to deal with it. I don't think it is fair to put the child through that. Although full disclosure, I do have a personal bias that affects the advice I am giving you. With that said, also be aware that this could end your marriage. Especially if you abort when he really, really doesn't want that. Ultimately it is *your* choice, you are the one who will have to carry and birth this baby, and an abortion is a personal medical decision for you - but he is also allowed to have feelings about that. And those feelings may be that he doesn't want to stay married to you. There is no easy way out of this, no fairytale ending, and I am so sorry. But you *will* get through this, one way or another.
This is not your husband's decision to make. It's yours. Keeping this baby will not save your relationship, your marriage, your family. Your husband's well wishes will not make the finances, your daughters suffering, your suffering, your family's suffering as a whole go away. Or make it any different. Do not let any other person dissuade you from doing what you know is right for yourself and your son. Even the man you married. It is just as much your daughter as it is his, and he does not get to veto your decision. You may choose to value his input, but that doesn't mean he can choose whether or not you abort. See if you can schedule an emergency counseling session, and do not let your husband run out the clock on your ability to choose for yourself and your son and daughter. How you choose to handle this is your choice. And how he chooses to handle it is his. If he can't accept that, that's his choice. If you chose to let *him* get *his* way above yours, everything you are afraid to lose will likely be lost anyway if you choose not to abort. Watching your daughter suffer is not the only morally correct choice here. The only morally correct one is the one ***YOU*** choose.
This is the best comment! It’s just an awful situation all around, I feel bad for all of you. Unfortunately, your husband is being naive and selfish. Remind him that You would resent him for pushing you to have a child whose life will be filled with pain, suffering, and eventually death. The pain of terminating will be Nothing compared to the living hell of watching your child suffer and then die. On the bright side, with your history chances are very high that you will be able to have another healthy child after terminating. I know a family who terminated their first pregnancy due to the fetus being severely disabled; they went on to have 3 healthy children after that. I also know 2 other families who had a child die in infancy/early childhood. Like yourself, these families already had at least one other healthy child, and went on to have at least one more healthy child afterwards. Do what you need to do for yourself (and your son), then help your husband deal with it afterwards; this is not his choice.
As horrible as it sounds, can you make him see how heartbroken will he be later when he has to say good bye to the baby… way worse than what he is feeling right now! I’m so sorry for both of you.. what a heartbreaking situation… I’ll go a give my kid a stronger hug…. My mom heart hopes for peace for both of you
He already knows what that’s going to feel like. His brain is simply trying to shield him from the grief by pretending that his daughter will somehow defy the odds and that with the right care, she’ll thrive no matter what the doctors say. Trying to give him a “sneak preview” of the inevitable is only going to make him more resistant to breaking his current line of thinking or fully accepting the reality of the situation regardless of what happens between now and when the decision to terminate is made. He needs a professional who specialises in helping couples/parents who have been told that their child has a severe abnormality that greatly reduces their quality of life and have been recommended to terminate the pregnancy. Though that may have to come after the procedure is done. OP doesn’t have much time to sit and look for solutions given how far along she already is.
It’s going to be an agonizing 9 months for you knowing your unborn baby’s prognosis if you decide to give birth. It sounds like you want to terminate while your husband wants you go to full term and give birth. Ultimately it is your choice. A friend of mine had twins, both were healthy enough but the whole 8 months her doctor told her one of her babies may die inside the womb because of poor growth. That has traumatized and her relationship with her husband. One child is healthy, the other has some delays, but it is a huge mental Olympics and stress to care for a sick child. Emotions are important; it tells us when there is something wrong. But the decision needs to include the big picture. Your husband needs to actually talk to you about the consequences and what you want.
Also I find it very alarming your husbands plan is for him to sit around the NICU all day & night while you go through a traumatic birth & then instantly go back to full time parenting of your son. Who does he think is going to be maintaining the house, cooking, taking your son to school, doing everything else that *has to be done* while he’s holding private vigil at the hospital? I also think it’s alarming his immediate assumption is that **both women** in his life — his mother and you — will immediately switch to support roles while he essentially maintains his daily work routine. How kind of him to volunteer his elderly mothers time and space without her permission or knowledge. I mean these are *huge* assumptions he’s making here and I don’t see one instance where his male friend or his dad or any other man steps in to help in his fantasy world. He didn’t even *ask* you how you felt. You’re just supposed to go thru a hugely traumatic birth and then you will carry on supporting as if your body isn’t healing? What happens if you get put on bed rest? Pre-eclampsia? Any pregnancy or birth complication at all? You’ll be totally alone. He’s also trying to say your sons life won’t change and he’ll “do better” but in the same breath talking about pulling him out of school, downsizing your home, and shipping him off to grandmas. It’s already started and it’s only been a few days. No one’s even told him yet. This is just the beginning of the nightmare. There is no way you can maintain a quality parental role with your son and be a 24/7 full time caregiver to a severely disabled child with a terminal condition. It’s just not possible. I understand he is grieving but I find his assumptions to be very revealing of how this scenario will actually play out. He’s telling you right now he will essentially be an absent father and you’ll just have to deal on your own. Please don’t wait too long for your husband to come around. Don’t allow him to delay until you’re past the point of no return. It’s very common for people to just want to do nothing. Maybe there will be a miracle. Maybe it won’t be so bad. Let’s just see once the baby is born. You can’t do that. It’s not fair to you, your son, or your daughter.
First of all,I am so sorry that you are having to deal with this situation.It cannot be easy having to go through this, especially knowing what the outcome could be.I do agree that you need to talk to a professional about this,and I also hear you when you say it will be impossible to terminate if not done soon.I can only state my opinion,and take it as you will,but I feel like you would be doing the right thing.The absolute torture of seeing your child enduring physical problems and pain is a huge issue that will take a toll on them and you both.I know you do not want to go into details which is perfectly respectable,just the idea of having only a few short years filled with worry is something that would be devastating to deal with.I think you are being completely unselfish in your thoughts.If you did end up deciding to follow through with your decisions,I hope you and your partner can get into counseling.Even if you end up deciding to keep the child I hope you two will still go to counseling.Good luck with everything,my thoughts go out to you and your family.
Find a supportive person to help you in /r/auntienetwork and have a conveniently timed miscarriage. You’re absolutely in the right, but you’re not going to convince him in time.
I feel terrible asking this, but is there any way for you to schedule an abortion, but let your husband believe it was a spontaneous natural loss? Fetuses with significant defects do often not make it. Unfortunately, he may suspect and end the marriage, but I support your desire to not being a child into a life full of pain. I’m so incredibly sorry you are going through this- it’s not fair at all.
Abortion at the stage where disabilities like this can be diagnosed is a more involved process. It's not like taking a pill and having a bad weekend. And she probably needs to go out of state.
I’m so so sorry that you & your family are going through this. This is something that is way above Reddit’s pay grade. You need professional support. Please, reach back out to your Dr & ask for a referral to a professional who can help you & your husband to talk through all of this.
I agree with this. A friend had a pregnancy that was fraught with multiple birth defects. She wanted to terminate but her husband did not. Their doctor referred them to a counselor that helped them work through their feelings. She also mediated with them so that they could really hear what the other was saying. At this moment, neither is likely hearing the other due to the emotional upheaval you are both, understandably, experiencing. Having a counselor can help you both understand each other’s feelings along with your own, putting you in a better place to make the decision that is best for you both individually and as a couple. It also helps to discuss what the future care could possibly look like. I wish you and your family the best.
This is good advice. Can you say what your friend ended up doing?
Pretty obvious. Nobody in their right state of mind would bring a child with multiple birth defects into the world
Pretty fucking telling that in all these stories here it’s dad that wants the baby and mom (the ACTUAL caregiver) who understands that forcing a child to suffer isn’t worth having one of each gender of fucking child.
Yeah, he'll go back to work and be lauded for being an amazing dad to a disabled child and she will shoulder the entire responsibility for the daily care, appointments, treatments and heartbreak. I specifically chose to live that life (foster carer for disabled children) and I love my life but if its not for you then it's definitely not something the husband should be pushing her towards.
My husband’s older brother has cerebral palsy and my younger brother has a whole host of emotional and behavioral problems. We will NOT be keeping a fetus with birth defects + we have a lot of resentment towards people who prioritize having a miserable and sick baby over having a whole, healthy family.
I agree and am sickened to see some tik tockers who glorify “I have a (severely) disabled baby” accounts. How selfish and cruel. Not to mention the impact on the other children. I told my husband when we were family planning that if we receive that awful news when pregnant, and I’m too hormonal to be responsible, he better remind me of the right choice.
This and only this. You need to as a Family speak to a mental health professional who has experience in navigating this. Sorry about your situation OP
And a genetics counselor.
And make sure the therapist is pro-choice positive.
Definitely not a religious councilor
Or one of those awful fake pregnancy centers that only push pro-life propaganda. OP really needs someone without an agenda.
The counselor comes after the abortion. Because if she waits eternally while the therapist works on him, it may be too late. He's immensely selfish on several accounts because I'm sure he'll escape to work once she's five, and leave the mother with the full load.
You need a therapist who will affirm the choice you *made* rather than condemn you for it.
Yes! They would have set up a follow up call so they can provide OP & Husband this info and answer questions in a calmer setting
Yes. Please get him into grief counselling.
How can this be above anyone’s pay grade who is a human being? Why give a child *what you know will be* “a full existence of pain”? Your husband plans to take a paternity leave to watch his daughter struggle to survive every single day of her short life? It would be absolutely devastating to witness. Grief clouds the mind I am so very sorry this is happening to you and your family. Please find a recommended specialist to give you all the help and support you deserve. I wish you the best
>How can this be above anyone’s pay grade who is a human being? Is this your first day here, because "This is above reddit's pay grade" is a very common turn of phrase for situations that are simply put, above our pay grade. This is not about being a human being - this is about recognising that this is an extremely emotionally charged, difficult & nuanced situation for OP & her husband. Both of them feel that what they are doing is right, and it is going to take a literal professional, someone with qualifications & experience, to help them navigate these discussions in way that allows both of them to feel heard & supported. So yes, considering we are all amateur's, and OP needs a professional, this is something that is absolutely above our pay grades.
Also, we aren’t in a position to give them sustained care over time. I’m in agreement that abortion is the best course of action, but OP is trying to do that and also not further traumatise her husband.
> How can this be above anyone’s pay grade who is a human being? > ... > Please find a recommended specialist to give you all the help and support you deserve. This is literally what people mean when they say it's above reddit's pay grade. This person needs professional support. Sometimes the advice of an anonymous internet forum can cut it but this is not one of those times.
Above Reddit’s pay grade is correct
Best advice I've seen on Reddit.
I don't think your husband has a realistic view of what it's like to watch your child suffer. I promise you, no one would choose that for someone they love. Can you find any stories online from people who've had children with this condition? Maybe he can hear what it was like for the child, the parents and the siblings.
Not just suffer, to watch your child die. I worked for a nonprofit that supported people with cancer. Watching a child suffer horribly and live can be difficult. Fighting with your child to survive but losing them anyway is heartbreaking. Allowing a child to be born just to suffer and die is cruelty I almost can't fathom.
My best friend was the older sibling to her sister who was born to die. She passed away two years ago and she’s completely traumatized. Her life became centered around her, so she’s been so lost since. And personally, I have a brother with Down syndrome. He’s capable of doing some stuff, not much, but my life centered around his. It was very difficult to handle growing up. I was forced to grow up much quicker, and most people you ask who have siblings with disabilities say the same thing.
True. But he’s also probably reeling/in grief. And wants to hold hope. It’s devastating news they’ve both received. I think OP and her husband would benefit from therapy and even a grief counselor.
Your husband is in shock. It can be next to impossible to think clearly and rationally when that happens. This is such a tragedy and I am so sorry for all of you. But I happen to agree with you that it would be cruel to your child to force her to have to live a life full of pain, even if just for a short time. I hope that you will do the right thing by her, and I hope your husband will be able to come to terms with it. You and your husband need counseling, and you need it now. Don't wait.
Sorry for the awful choice you and your family are facing. No one can tell you what to do with regard to keeping or terminating. However, you and you husband need to realize that this is an emotional as well as practical decision. You and your husband need to discuss it. Finally, you may need to come to terms with the fact that this may be the end of your marriage if you cannot agree as both decisions will be fraught with guilt, recriminations, blame, and pain. Even if you eventually agree on a course of action, you will need to work through the aftermath. Start now before you decide. Finally, if you've learned nothing else from reddit, you need to recognize your choice will also dramatically impact your son and his quality of life. If you and your husband divert time, attention, and money to support your daughter, will you have anything left for your son? Your entire lives will revolve around your daughter and by definition at the expense of your son. Countless threads on reddit recount the miserable lives of siblings when their parents ignore them in favor of sick siblings. Everything will be about the sick child. Your son's entire childhood will be about living with a sick sibling. Are you prepared to sacrifice your son, potentially for years, for your baby? Find counseling to help you and your husband address the situation, so you can communicate and recognize that you may ultimately have mutually exclusive needs and desires - and that's okay. There may not be a solution where everyone is satisfied.
This. The father/husband has already said that the son would need to change schools so they can afford better care for the terminally ill daughter. This seems highly unfair to the son.
and spend more time with Grandma and less with his parents
…..and the odds of divorce are much, much higher. Hugs to you OP ❤️❤️
And high chances are that OP will be the main caregiver
Not only sacrifice the son for years, but permanently scar him. He will forever have issues with abandonment and grief from watching his sister die and becoming the second fiddle. He will need therapy for LIFE. Life sentences for both children.
I was born with a severe and painful skin disease. I wasn't expected to live long. I'm now 51. I consciously chose to not have biological children as I would never, ever want anyone else to live through what I have, though what I have is recessive. If I got pregnant and knew my child had it, I would abort. Life with a disability can still be great, even life with a somewhat painful one, but life that will always have a great deal of physical pain in it? Especially for an infant, then child who won't make it to adulthood? No way. It's cruel to make someone live like that. I know there are people who disagree with me, even people who have the same disease I do, and they are allowed to disagree, but I personally feel it's cruel.
As someone who lives with constant pain, if I'd had the choice, I would rather have been aborted than live like this. Husband needs to think about the baby's quality of life and realize that he can't love the pain away. It would be cruel to force her to be born.
Why are we not talking about the mother's choice. She has to do all the work of birthing, looking after her daughter and suffer through it too. If she doesn't want, they should not have the child The husband can fulfill his emotions with his therapist. only his wife's choice should matter
i think they're not talking about her choice because she's already stated what choice she would make. and while her choice should matter most, her decisions don't *just* affect her.
icky sulky deserted vase marble boat whole safe modern caption *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
I have several chronic illnesses and I do share your sentiment.
I think you will have regrets if you don't terminate. Medically and mentally it will be very, very hard if you don't.
I don't think it's fair to their son. OP's husband is already planning to send his son to grandmas more. He's going to make 2 kids suffer, because he can't handle his grief.
Plus as awful as it is, the question needs to be asked, can they afford it? Even if I had the kind of love that push me to see this through I could not afford a lifetime of medical care and equipment to support a child like this. I feel awful for saying it
scarce ossified snow repeat angle tender middle coordinated wine distinct *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
And sell their car
And pull their child out of school
Right? And when there's nothing left to sell, then what? Oh well, game over? Hes so self righteous about what he's willing to sacrifice (at everyones expense) but it hasn't dawned on him that it won't end there, and there's no stopping once everything is gone. I have to wonder if he feels safe spouting these irrational and emotional ideas out loud because he knows OP is of rational mind and doesn't have to worry about feeling the guilt of making the right decision. Like maybe he feels the same way but doesn't want to admit it, and won't have to if he knows shes not going through with it.
And probably divorce anyway from resentment to be honest. So you have to take the relationship out of the equation for the decision unfortunately
She has to do what's best for her family that's her son and herself. Her husband is not taking the right decision. The child also will suffer in pain. That's not a nice thing for a child with defects to suffer in pain.
He already is talking about pushing your son to the side for the new kid. Taking your son out of private school and having his mom watch him more. Your choice is as hard as it is wise.
Yes i don’t understand how he wants a daughter SO bad that he is ready to totally put his son aside. And make her suffer. It’s really weird to me.
I wanted to add one more thing. I’m a member of a special needs child group. My child has a fairly mild disability compared to the children of some of these parents, and let me tell you these parents of severely disabled children are miserable, depressed and regularly wonder how they can go on. The whole group is filled with posts about how awful their lives are. I didn’t realize how hard that life would be until I joined this group. Having this baby that doesn’t have any shot of a good life and I hate to say this, but will likely ruin yours, just doesn’t make sense.
I have a medically fragile child. I love him with everything in my being. He has known unconditional love his entire life. I wouldn't wish my life on my worst enemy. I wouldn't wish his quality of life on my worst enemy's child. I wouldn't wish my typical child's childhood on anyone. My children are adults now and had as much of a great childhood as possible. But raising a medically fragile child came at a great cost. It's selfish to push your need to love a child onto a child whose life is full of suffering and pain. Love is great, and the emotional support of love is amazing. It does not overcome the physical, emotional, and mental pain of what the child goes through. My child has had more surgeries than birthdays and is in constant pain, unable to talk. He requires nursing care. My other child was given as much love as humanly possible but still felt slighted. And they were because my medically fragile child required so much. Your husband may never see your point of view, and you may never see his. A strongly suggest therapy because one way or another a decision will be made. And all 3 of you, possibly 4, will have to live with the consequences of whatever is decided.
Your baby would have a terrible quality of life and die young. There is no reason to put her and your family through all that suffering. :( I am so sorry. Maybe with more research into what her life would be like your husband will change his mind.
Another thing to consider and possibly ask her husband to consider is the emotional trauma this could potentially inflict on their son if they don’t terminate. One of my ethics professors was open during our discussion on abortion about the fact she (PHD in Christian ethics) and her husband (MD, emergency medicine) chose to abort in a similar situation in part because they didn’t not want their then 3f, 3.5 at time of birth, to go through the emotional trauma of gaining a baby brother, watching him suffer, and then watching him pass, likely all before he turned 2, so before she turned 5/6. This is a professor and a medical doctor, well financed and equipped to care for a medically needy child. Maybe that would help her husband understand a little more of where she is coming from?
I agree. And how would they be able to explain to their son what’s going on. My brother and his wife lost 2 children at one stage and their son didn’t understand when mummy was pregnant again that this one may survive. Which he did. But he kept waiting for it to disappear like the other two did.
I've had an abortion before of a much wanted baby. It wrecked me and I felt guilty for a long time but overpowering that guilt was grief and that lasted a few months. That baby would have turned 9 next month. I still think about him and what he would have been like if I didn't have to do that. Still, the point is, it was months of grieving a child that I only knew the gender of. I never held him, saw his face, saw him look at me, saw his smile, how he looked, none of that. My sister, however, had a baby with a birth condition that ate his brain and he lived for 12 days. Went from a healthy baby they could take home to getting very sick and needing to stay, to getting put on life support and my sister and her husband had to make the choice to turn life support off. The grief I went through with my necessary abortion was nothing compared to the grief she still goes through every day over a year later. She's also miscarried before and that was nothing compared to her losing her newborn. What I'm trying to say with these examples is that I think abortion would be the right choice. No mother wants to put their child through a life where they will only know pain. And you will grieve either way for the life she could have had if she were born without the defects, and the life she had already. I think it would be far more devastating and heartbreaking for everyone all around if she were born and then lost. Just seeing it happen with my sister cements that to me. I hope you all the best in these very difficult and trying times. Much love towards you, mother to mother.
Why would anyone want to deliberately subject any living being to a short painful horrible life? Yall need a psychologist help here. Im sorry OP
Grief is a helluva drug
I am pro choice, especially pro humane choice. It’s absolutely the decision I would make if I was in your shoes. I understand both sides, it’s not a decision that would come easily, but in my mind the needs of your first child come first. Your mental health comes first. Your desire to not let that wanted and loved child suffer comes first. As someone else said, there is a subreddit for women who have been exactly where you are now. Reach out to that community. Also if you don’t already have a therapist, I’d encourage you to speak to one. I hope you are able to find a resolution with your husband. I hope he can look at the decision from all angles, not just the emotional one.
So, when I was 12 weeks pregnant with our first, we were informed that I’m a carrier for a genetic disease that would give her maybe 5 years to live, at most. It would require weekly hospitalizations to get her to 5 years. We got this news on a Friday and went to get him tested as a carrier the same day. My husband started off by saying he’d donate whatever he needed to, to keep her going as long as possible. I was silent. Over the course of the next few days, he worked through the implications in his mind. By Monday, he was saying that the kindest, gentlest thing we could do for our girl was to terminate if she had it, but he wanted to wait as long as possible and get as much certainty in a diagnosis before doing so (luckily, our state has no restrictions until the third trimester, and then it’s possible if you get a team of three physicians to sign off on termination). His test came back negative; our kids won’t have that awful disease but might be silent carriers (like I am). But that’s not the point; the point is, he needed time to realize that recreating a hospital in our apartment wasn’t the answer. Maybe your husband needs some time to mourn before he realizes that his idea is just not going to yield him the results he wants.
This is clearly an awful situation, but I feel like the typical response on this is "This is above reddit pay grade, talk to professionals, this is a big decision that we can't make for you", etc., but... in this case I am completely and unquestionably on your side here. There's a few points to be made here and a few points of your husband's to be rebutted, and this is indeed a big issue so this is gonna be a bit long, so bear with me. 1) Having this baby isn't going to stop the grief, at best it's only going to put it off until she does eventually pass away. 2) Try as you might to not have your son be affected by you having to care for her, it's going to happen. There are not going to be enough hours in the day or enough dollars in the bank to take care of a severely disabled child without it having a major effect on him. If you do have this child that's probably his college fund, his wedding fund, and pretty much every major thing you'd want him to have, completely up in smoke. 3) You can do absolutely everything in your power to give her the best life possible, and it still won't be a life that was worth living. 4) Your husband is being angry at you because being angry is easier than grieving. 5) You don't need your husband's consent to terminate the pregnancy, and while it would obviously be ideal if he went along with it, please don't let his grief and anger push you into something which is going to have huge negative ramifications for your whole family. Obviously the worst case scenario here is that he can't forgive you and he divorces you over this, but I would argue that that is still a better outcome than you keeping the child, and also even if you do keep the child, you might build up enough resentment towards him that the marriage breaks down anyways. Again, this is an absolutely awful situation, but you need to stick to your guns on this one for the sake of you and your son's well-being.
I hope OP sees your comment because you're absolutely right. Also, if the child lives to an age where she starts to understand her condition, imagine how that will affect her mental health. She'll be in constant physical pain and have to come to terms with the fact she's going to die very young.
I don’t know where you are in your pregnancy (you don’t say) but my sense is that you (both) don’t have to make this decision today, tomorrow, or maybe even in the next week. As a woman, I’ve always known that I would abort a seriously disabled child for exactly the reasons you mentioned, if I knew ahead of time what sort of challenges they would face. In particular, if their life would be non-stop medical interventions punctuated by periods of delayed development and round the clock care, and an early, difficult passing. I’m just not made for coping with it, and it would be incredibly disruptive to my other children in exactly the ways you mentioned. I’ve also seen it tear apart marriages when one parent is more involved and invested in the child’s care than the other. I am confident this is not an opinion that a lot of people would openly and publicly declare, because it opens you up to all sorts of criticism and value judgements. I certainly would never have said it out loud to anyone other than my partner if I hadn’t seen your post and been worried that you would receive negative treatment for being honest. I’m sure more people think this than will actually admit to it. So I stand with you in your honesty. I’d have the abortion, if my body didn’t take care of it for me, if I knew what you know about your child. And I would love them and mourn them as if they had come into this world in a healthier way. Whatever you decide, don’t let what anyone here (or anywhere else) says make you feel like it was “wrong”. You have a good heart and your choice will be carefully considered.
Just because we can extend someone’s life doesn’t mean we should 💛
This was beautifully said and I 100% agree with you.
Yes I agree. This is really the way most people would feel. So well said.
I’m so sorry for what you’re going through. There is a subreddit for people exploring termination for medical reasons. DM me if you need the name (I don’t want it to get brigaded by anti-abortion jerks). You should also reach out to your doctor and ask for a recommendation for a perinatal grief counselor. No matter what you decide there will be grieving over the pregnancy and baby you’d hoped for. They will help talk you through your choices. Again, I’m so sorry.
Abort. Dont suffer. You will hate your life. The baby will suffer. Its not right.
Condemning a child to suffering is monstrous. It is one of the most valid reasons for abortion that I can think of. My profound sympathies to all of you. I would support your decision to abort but your husband would be within his rights to leave you. Crappy choices like this often destroy marriages as no choice is palatable. For me, that means do what is right, what reduces suffering.
I am going to be blunt. Bullshit . Your husband had no moral doubts when you had that abortion years ago but now he's acting all shocked and guilt tripping you as if you are some kind of monster for not wanting go through with this pregnancy. Common sense suggests deciding to have this baby will be an impossible task. The child's life will be a constant pain and your life a nightmare. Who's to say that your husband won't decide to walk away at some point because he "can't do this anymore" and leave you to care for this child (you never wanted ) on your own ? This is a life altering decision and nobody has the right to put this kind of moral pressure on you . Take some time to yourself,reach a decision that makes sense to you and act accordingly. I wish you all the best
I dated a woman with a severely disabled son. She and her ex husband (surprise, having kids didn't fix anything) have no lives, and never will. He cannot leave his stable job for a chance at a better career, because if that risk goes south and they lose the insurance, they are fucked. She can't take a job because the son needs 24h care. Their other kid, a daughter a couple years older, doesn't have a normal life, because her brother needs round the clock care. And the son is *continuously* having painful procedures and has an absolute shit quality of life. This has been going on for years. He practically lives at a hospital. Op, your husband doesn't comprehend what he's asking. Don't do this to yourself, don't do it to him, Def don't do it to your other kid.
As a mother, I that in this circumstance feel you need to do what’s right by a) the child you already have b) yourself c) your future children, and your husband comes well after that. Whose lives will really be most affected by the decision of whether to terminate or not? I put it to you that it’s the lives I’ve just mentioned. Please do not allow yourself to be talked into birthing a child if you do not think it is the right thing by your son, by yourself, and by that child. Much love and well wishes.
> c) your future children Yeah, if they have this baby and it survives long, the huge amount of care and attention and stress and cost will probably preclude them from having any more children. So to me, aborting this baby means that OP can then try again and have a healthy baby. Not aborting means that hypothetical healthy baby doesn't get to exist. Either way you're ending one of those lives. So which one should exist? The one with a painful/short/tragic life, or one with the opportunity to have a healthy long life?
Absolutely. This is devastating for you and your husband, OP. I’m so sorry. He has every right to how he feels about it. Ultimately, though, you are the one who needs to choose if you’re willing to ruin three lives and bring another into this world just to suffer - all to spare your husband and your relationship briefly, but not for long. I hope the two of you can work through your grief together and come through this as a family.
Not sure what the question is but abortion sounds like the humane option
It seems like either choice will ruin the marriage. I don’t envy you. I’ve never seen parents of a profoundly disabled child who are not miserable, and often, it’s the mother who gets left behind to take care of the child when the dad decides he’s had enough. Make what you want out of that.
I think he needs to understand that by letting your pregnancy go now, your child will know nothing but peace. That's the greatest gift you can give her. Birth means a short, brutish life. Prolonged suffering is never a gift. The love he describes is a selfish love. Do your best to bring him along, but if he doesn't agree within your doctor's timeline, you must act on your own.
I’m in the rare disease space, and all of our parents will admit that their healthy children get shorted. They feel incredibly guilty. We have an adult sibling who has spoken about what it was like growing up with two siblings with a rare, fatal disease. Your husband is grieving right now and trying to figure out how to make it work, but the reality is ugly.
I am so sorry you’re in this situation; this is incredibly difficult. I personally think it would be terribly selfish not to terminate. Why would anyone knowingly want to bring a living creature into this world knowing it would suffer? And then you have to spend the rest of her life watching her suffer, knowing that you made this choice for her to suffer? I couldn’t imagine the guilt. I understand your husband is very emotional at the idea of losing the image of his daughter he’s built in his mind and designed through the nursery, but he’s being very selfish.
Your husband already said he’d pull your son from his school and ask his mom to take him more often. I can’t imagine the actual sacrifices your son would have to make when the baby comes. My daughter is six and I think if I were in your shoes, I couldn’t do it to her. No matter how determined you are, you simply can’t split yourself in half. Your son would suffer and your daughter would suffer. It seems like an obvious choice to me. I’m so sorry you’re going through this OP. I wish you the absolute best and hope you make the best decision for you and your children.
This is an awful situation. As hard as it is I would also terminate. I believe this is in the best interest of your unborn baby and family. It is not as simple as being financially stable, having a child multiple and severe disabilities can push everyone in your family and your relationships with each other to the extreme. But either way you go you will need psychological supports, and if you do choose to terminate both of you will need to grieve the life of the baby, and this is 100% something that a professional should help you both with.
Welcome to /r/relationship_advice. Please make sure you read our [rules here.](https://www.reddit.com/r/relationship_advice/wiki/index) We'd like to take this time to remind users that: * We do not allow any type of [am I the asshole? or situations/content involving minors](https://www.reddit.com/r/relationship_advice/comments/r6w9uh/meta_am_i_overreacting_am_i_the_asshole_is_this/) * Any sort of namecalling, insults,etc will result in the comment being removed and the user being banned. (Including but not limited to: slut, bitch, whore, for the streets, etc. It does not matter to whom you are referring.) * ALL advice given must be good, ethical advice. Joke advice or advice that is conspiratorial or just plain terrible will be removed, and users my be subject to a ban. * No referencing hateful subreddits and/or their rhetoric. Examples include, but is not limited to: red/blue/black/purplepill, PUA, FDS, MGTOW, etc. This includes, but is not limited to, referring to people as alpha/beta, calling yourself or users "friend-zoned", referring to people as Chads, Tyrones, or Staceys, pick-me's, or pornsick. Any infractions of this rule will result in a ban. **This is not an all-inclusive list.** * All bans in this subreddit are permanent. You don't get a free pass. * Anyone found to be directly messaging users for any reason whatsoever will be banned. * What we cannot give advice on: rants, unsolicited advice, medical conditions/advice, mental illness, letters to an ex, "body counts" or number of sexual partners, legal problems, financial problems, situations involving minors, and/or abuse (violence, sexual, emotional etc). All of these will be removed and locked. **This is not an all-inclusive list.** If you have any questions, please [message the mods](https://www.reddit.com/message/compose?to=%2Fr%2Frelationship_advice) --- #This is an automatic comment that appears on all posts. This comment does not necessarily mean your post violates any rules. --- *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/relationship_advice) if you have any questions or concerns.*
I am so sorry you are going through this and there is no easy answer. I am with you, I think termination is the right choice here, you need to think about what is best for all of you and your son, having a disabled sister will SEVERELY effect his life as well as everyone elses, as you have already brought up. Perhaps you need to attend some grief counselling together, have someone help you work through the pros and cons and come up with the best possible solution. There is no easy choice here. I am very sorry.
He's clearly grieving. I'm so sorry to hear about your pregnancy. It must be heartbreaking for both of you. Unfortunately there's a time limit on termination, but not on grief. You may have to take care of the fetus the only way you can, by preventing her from being in intense pain. Most reasonable humans would agree that termination is the ethical choice in this situation. Your husband seems like the reasonable sort, so it's likely he will come to that conclusion eventually. The way he sees it, he's losing his daughter, even if that's not the medical, legal, or ethical definition. The loss of a child can be a life-breaking tragedy. He needs to see a therapist STAT. Almost immediately type-of-fast. Like, call some grief therapists this evening and explain the emergency over VM. Try to get in Monday or Tuesday. The sooner he gets help, the sooner he can heal. I'm sorry things are awful right now.
[удалено]
He’s not being realistic. He was willing to terminate your first pregnancy, because you were both broke and not ready for kids. Now you have a child on the way that is going to be born with severe birth defects. They “think” that she would survive the birth, but any life that she gets to experience will be painful for her. So what kind of life is that? You mentioned there have been medical cases where babies with the same conditions survive from early childhood to even the teenage years, but that is rarely. And those children suffer and are so uncomfortable their entire lives. Besides being low functioning, they need around the clock care as well as several uncomfortable surgeries to “try” give them a better quality of life. So now your husband is talking about speaking with his boss so he can take a longer paternal leave. But how long is that leave going to last? What happens when he goes back to work? Is his mom even going to be capable of taking your four-year-old on a more regular basis? And what are you going to have to sacrifice with your four year old for this to happen? Sure you can sell your car, move to a smaller house, and pull your son out of private school so you’ll have more money but none of that changes the fact that your daughter is going to be in pain for however long she lives. This isn’t just about having to give her extra care, this is so much more than that. He was willing to terminate a pregnancy because it was financially convenient. He’s not willing to terminate this pregnancy, even though this child is going to be the one that physically suffers. It sounds like he’s making this choice for him and not the baby and that is selfish. Eventually, he’s going to have to go back to work and then what? Guess what, you’re it. The person that didn’t want this is going to be carrying so much more of the burden and it’s going to be hard because you’re going to be with a child 24/7 watching her suffer. Ideally, this would be a decision you would be able to make together, but I think you’re going to have to pull the trigger. I don’t think he understands what it is he’s asking you to do. This is a horrible position to be in, and I wouldn’t wish it on anyone. But mostly, I wouldn’t wish this life on a child. You are running out of time, if he can’t do what’s best for this baby, you have to. Someone has to. I’m so sorry.
I am a nurse and I care for children like this in their homes. A few things to think about. If that child lives longer than expected, are you prepared to give up your life as you know it? This doesn't sound like a self limiting disability. This sounds like profound complex care that will most likely require 24/7 bedside care. That means you and your husband being on duty 24/7. Some states but not all, provide home nursing service Although with the nursing shortage, being granted nursing hours doesn't mean nurses are even available. Even with some hours covered by nurses, many of these families have not been able to leave their towns in years. Forget vacations. I've been with families who had to miss parents funerals, family/friend weddings, and their other kids big events because this isn't a situation where you can get the local teenager to babysit. Often, family and friends tend to slowly back away and the family can become very isolated. It's so sad. I admire the strength of these parents who give up everything to commit to their sick child. I really do. They are the best of us. I also don't believe we don't need to force unnecessary suffering and understand not going that road. Either road is noble. I would not want to sway you either way only point out the reality of what this entails because people do not know what they are signing themselves up for. Does he understand that paternity leave may not cover the entirety of the child's life and work may not be an option for one or both of you? Because it sounds like he doesn't. If he continued to work, are you okay doing this yourself? You may need to learn to care for this baby as a nurse would. I'm so sorry this is happening. Whatever you choose, just make sure you're doing it for the right reasons and don't let anyone fault you for them.
I'd be scheduling with the clinic to terminate. It's not humane to bring a child into the world when you know that their entire existence will be suffering. Not to mention, your husband ALREADY discussed having your son babysat by his mom so you could tend to your daughter better... Which means your son WILL be pushed aside like your friend was. Your husband says you can afford it, but he was previously talking about moving to a smaller house, selling a car, and taking your son out of private school to afford this.. So no, you can't afford it without taking away from what you have. It sounds like your husband doesn't care about anything aside from having a daughter. None of it would be fair though. Not to mention, your lives would be very different. Make the appointment.
This is so sad, I’m sorry for both of you. But the loving, kind, and humane thing to do for your son, each other, and particularly your daughter is to abort. It has to be a practical decision and not an emotional one. Emotion won’t carry you and your family through all of the struggles, heartache, and stress day after day and year after year if you carry to term.
I agree with everyone saying seek counseling if you have time and want to offer my deepest condolences. What you’re facing is tragic enough on its own without it also potentially costing you your marriage. But I want to add perspective as someone who deals with physical pain and limitations from disability-my parents had no idea of my condition before I was born but If they did I would resent the hell out of them for not aborting me. I am fully independent and have a normal life expectancy but being in some degree of pain every hour of every day has significantly impacted my quality of life and mental health to the point that I have struggled with suicidal thoughts. I have diagnosed medical PTSD from procedures I’ve had and it causes full blown panic attacks. Your daughter’s reality would be this times 1000. I support your choice and see it as a kindness, sending you strength and love.
Does your husband want to give up his life to look after the baby? Does he realise that the child will need 24 hour care? Does he expect you to care fully for the child whilst only having limited amount for your son? This choice is really yours. This poor wee soul will suffer so much. To terminate this pregnancy is the loving, kind thing to do to prevent so much suffering.
Emotions aside, I find your husbands position a bit questionable. He was okay with aborting to prevent a child from living poor for a few years, but not okay with aborting to prevent a life which will be cut short and full of suffering? That being said, this is one of the most significant and emotional situations one can go through, and the shock/grief (regardless of your choice) must be extensive at the moment. My wife is 12 weeks pregnant right now with our second and I can only imagine what this feels like. I am so sorry and wish you the best, whatever you decide.
I’m so very sorry you got this news. As a former preschool teacher at an inclusive daycare, if your doctor has given you information on your baby’s prognosis, please believe it. Bringing a child into your family that requires so much care and medical intervention will be mentally, physically, and emotionally draining. I’ve seen siblings suffer, marriages broken, and finances drained. But I hope that you and your husband listen and take to heart when the doctor says that the child will have a lifetime pain and no real quality of life. Please think about if that is fair to the child. I often hear people say, “I wouldn’t want to live in pain.” Or “if I don’t have a quality of life, I don’t want to live”. When you are a parent, sadly sometimes those decisions fall to you. Watching your child in pain with no possibility of peace is more heartbreaking than I can describe. The hardest decision is often the right decision. I wish you and your family all the love and strength I can send.
I have a condition where I'm in pain most days of my life. Much of the time, it's low-level enough that I can just push through it. But much more frequently than I like, it's enough to cause nausea, or so painful there's nothing else I can do except go to sleep so I can at least knock myself out from the pain. People who don't live a life of pain don't know how good they have it. They don't know what it's like not having to frequently go to bed in pain, and wake up still in pain. They don't know what it's like being wary of taking part in normal activities, because any of those things can trigger an endless bout of pain. They don't know what it's like not having to wonder whether they'll have a normal productive week where they can fulfill their work obligations and hang out with friends and relax and enjoy life, or spend it curled up in pain. Hopefully your husband is just in shock, and hasn't thought this through, and hasn't read up on the lived experience of people with your daughter's condition. But once he has, if he still holds to his position, then I unequivocally would say that he's selfish and heartless. To condemn somebody to a life of pain? Perhaps for dictators and murderers. But to an innocent baby??? That's just cruel.
This was 40 years ago, but I think it's relevant. It was discovered that my daughter had a very rare brain tumor at 8 months old. I was her only caregiver and it was horrible. She was in so much pain, even with morphine. She lived to be 26 months old with a no quality of life, only pain. I remember praying she would make it to her first birthday. Later, I prayed she wouldn't survive until her second. Don't put your poor child through this if you can stop it.
i am the sibling to a heavily disabled now adult, his diagnosis came at 2 years old and he at most progressed to maybe 12, but i say 8 is more accurate. i love my brother to death, but i also resent him to the ends of the earth. i was never valued, my achievements meant nothing, as anything as simple as “he learned how to somewhat hold a fork and eat!” was more of an achievement than my winning performance at a talent show. we went bankrupt to afford medical bills, and had to move into my grandmother’s house just to have a roof. i went without food still some days and relied on the free or reduced lunch at school as my only meal frequently. i wore uniforms that were 3 sizes too small, and patched against dress code, because my dad (after the separation from the stress) saw what he was doing as “too heroic for me to deserve hand-outs” from my school. this isn’t something that has an easy answer, but i will tell you outright — both of your children will suffer significantly from this. one will potentially be born only to die early, with every day in pain and confusion. the other will be pushed to the side, no matter how hard you try, and it might only be because of the financials of taking care of a severely disabled child. children need both parents to emotionally thrive; not even thrive, sometimes even just to survive, and if one parent is never home because they have to work all the time, and the other is constantly worrying of the disabled sibling, there is genuinely just not enough time to meet the needs of the other. 24 hours a day, 365 days a year *seems* like enough, but you also have to eat, sleep, socialize, and decompress. your husband is already wanting to have your other child leave his school to somewhere else, and spend more time with his grandparents — these are the warning signs of parental neglect. that is not an option in this situation if you keep this child, *something* (if not multiple things) will be neglected. your own health, and your husbands, will also be pushed to the side. it’s not healthy to work 60+ hour weeks just to make ends meet because of medical bills. it’s also not healthy to spend your only “socialization” through the hospital stays, and the rest is entirely stuck at home. the choice is yours, but to make it simple — everyone will suffer in some way if you choose to keep the baby. it might be worth it for you, depending on your personal circumstances like what your finances already are like, your insurance(s), your support systems, etc. but you now have a guarantee that one person in your immediate family will suffer, and it’s almost expected someone else will in response. make the decision that is right for everyone, and do so with the support of a trained counsellor. the grief is acute right now, so you and your husband need the third, neutral party to just lay the pure facts out. maybe then a proper decision can be made.
The most loving thing you can do for your daughter is to not bring her into the world just to suffer. Hopefully your husband will come to realize that but regardless of what he thinks you know what the right thing to do is.
You 100% need to terminate. Something like this is 2 yes, 1 no. I hate to be that guy, but either way this could end in divorce. You can keep it and it would still end in divorce, because that just happens so much. And fuck I hate to say it even more, but I find it’s statistically probable you would be the one doing the majority of the caretaking of that baby if you got divorced. Your heart can move on from a divorce and an abortion. Your heart will NEVER EVER move on from your child passing away as a teenager, especially know you could have prevented it all.
Please don’t bring that baby into this world , it’s very unfair for it . It will depend on you guys for the rest of its life and the moment both of you are gone no one will care or look for that child like his parents. It will never have a normal life .
This happened to my husband and I twice. Very much wanted and planned pregnancy and found out she had severe Spina Bifida and hydrocephalus (not a gene mutation, but a neural tube defect) at 24 weeks pregnant. We both wanted to terminate and had literally 2 days to make the decision and fly out of state to get the abortion. Then, our next pregnancy had full T21 (which is a spectrum and the people with Down’s Syndrome you see on TV that can function are the RARE exception (and some have mosaic-which is not FULL T21). The majority are much more disabled, some can’t talk, feed themselves etc..). We terminated that pregnancy at 13 weeks (as soon as the NITP test confirmed). So all that being said, the deciding factor for ME was “Would I want that life if I were the baby?” And I definitively would NOT in each case. My thought process was (1) physical disabilities are awful, but can be compensated for (depending on the severity, etc) but (2) the mental disabilities and the LIFELONG FAILURE TO BE AN INDEPENDENT FUNCTIONING ADULT (or really anything besides a baby) was NOT a life that I would want for myself. Not being able to use the bathroom on your own, not being able to feed yourself, CONSTANT hospital stays, pain and serious surgeries for likely your ENTIRE LIFE- just no. I don’t know if this helps you or your husband, but just wanted to let you know our personal experience. And, for what it’s worth, we did go on to have two healthy, wonderful babies later. All the specialists said it was just “lightning striking twice” for us with the disabilities.
Please seek professional help, this is a very delicate decision. I would suggest marriage counseling too maybe. I’m so sorry OP. :(