Would you knowingly have a child with difficulties?

[Muffassa]

This is a subject close to my heart as I have a child with a genetic, life limiting illness.

I was watching Lenox Hill on Netflix tonight & a doctor had a possible abnormality raised at their 12 week scan.

I know it is a massively sensitive subject which is why I wouldn’t necessarily canvass people in real life but if you were pre-warned via scan or similar of an issue that your child would have, would you continue the pregnancy?

AIBU - I would continue no matter what
YANBU - If I knew my child would / had a significant risk of issues, I wouldn’t continue with the pregnancy

I can say no, with a high degree of certainty.

Yes I'd abort. Depends on the needs though?

So you regret having your child?

No, I wouldn't. If it negatively impacted their life in any significant way (and I'll get flamed for this but I'd include anything more than very mild autistic traits in here as well) then I wouldn't have that pregnancy if I knew in advance. Obviously you can't though for a lot of things, and for that reason I'm not having a third child because I won't take the gamble that they might have something that means my current children get less than the attention they deserve and the new baby has a worse life than I'd wish for them.

It depends on what perspective you’re coming from. If it’s because I felt the child would have no quality of life at all, then that would be a consideration.

My child (now adult) does have significant difficulties, but she’s adopted, so I was prepared for some of what lay ahead- plus she was already here.

I could not possibly say unless I was in that situation. I have two children with disabilities who have by any standard good lives and I still could not answer that question except to say I would find is an extremely difficult decision. I feel so sorry for any parent put in that position it is absolutely horrendous having to make that decision.

No I would not.

My honest response would be, is an amazing life not enough despite it all? Not everyone gets that even with perfect health.

As I said above there is achondroplasia in my family, my family members with the condition face lots of additional challenges both physical and thanks to societal attitudes, life can be very hard at times, but I have never felt their were not worth living, and I suppose perhaps more importantly I feel they have a lot to offer the world and it would be a less rich place without them in it. Can you not reframe it, isn't the world better for having your amazing child in it? You must be proud of what they have come through. However your experience is your own, I would never tell you that you are wrong to feel the way you do.

I would 100% abort for Downs of any sort of condition that would require life long care. I know they can’t scan for it but if I knew a child would have severe autism I’d also abort. My reason is that I have seen people’s lives been utterly destroyed raising severely disabled children and those kids will never live independently. One friend has a very violent non verbal child and spends her days being punched. I couldn’t do that. Also social care is shit. I couldn’t live knowing that my child would be at the mercy of the social care system once I wasn’t there anymore. So much kinder to all to abort.

I refused antenatal tests for Downs Syndrome etc because I wouldn’t have aborted my child for having a disability. As it turns out one of my children has a genetic syndrome that causes learning disabilities (not one that is tested for antenatally) and she’s an absolute, genuine joy! She’s hard work, but all kids are, and she brings so much happiness to those around her. However, I think each situation, family and disability is different and I completely respect and support those who feel differently and abort a child with disabilities/ genetic conditions.

My dd17 ( in context it doesnt sound bad) said once that after growing up with her profoundly disabled brother that no she wouldn’t. She lost alot of her childhood due to his condition and she doesn’t want her adulthood to be the same. Hit me hard but i get it and i would feel the same

There are several reasons DH and I chose not to try and have children, but one was that we couldn’t stand the idea of bringing a child into the world and having to see it suffer in any way.

I get that we probably have an unusual perspective here.

Yes, it is a wonderful outcome, for which i will always be so grateful, I know we are very fortunate. She was delayed walking and talking, and even when she started school I was anxious that they would tell me that she had a learning disability which we hadn't picked up. I think I have only fully relaxed in the past year or so in terms of her development, and just completely enjoyed the amazing person she is. But I don't think I will ever truly stop thinking 'what if' - especially as I work in a special school for children with incredibly complex needs, so every day I am reminded of where we could have been. I am completely in awe of the parents who support their children in incredibly difficult circumstances, both in terms of their child's disability, and also the barriers in 'the system' which means support for children and families is not great.

I would terminate. As someone as a carrier for a life limiting genetic condition

I had a tfmr after an early NIPT showed a high risk of genetic abnormalities, which was confirmed with a CVS. It wasn't a difficult decision for me to make, and all the medical team involved certainly expected me to terminate. Life expectancy was very poor, 90% die within the first year of life (possibly wouldn't even reach full term), with very severe disabilities and it seemed pointless to me to put myself and my older child through that. I went on to have a perfectly healthy child and the family life I have with her and her sister is something we wouldn't be able to have if she had severe disabilities - just normal activities like mainstream school, sports, minimal contact with doctors, easy childcare, and days out.

I had a tfmr at 21 weeks. Baby had hypoplastic left heart syndrome. Genetic testing was ok but 60% of HLHS kids die before age 5. I would have had a 17 month old as well and also had to think about him, didn’t want my eldest to have a brother who would most likely die and have him have the trauma of losing a sibling. We’re Scotland and baby would have had to be in London or Birmingham hopsital. Most are in hospital at least 6 months, the “repair” is 3 open heart surgeries. The majority require a lot more surgeries than this to redo bits etc. each one huge risks of strokes etc. then you go on google or tiktok and find people alive and healthy in their 20s with HLHS. I live with the guilt every single day but I still do think it was the right choice.

I really couldn't say. In theory I might not. I certainly don't judge people for terminating children who would have severe issues. Not everyone is going to have the resources to cope with a very disabled child.
I don't know what I'd do. I have 3 other children who need me.. I don't earn a lot of money.. I'm not sure I'd cope.
But then I'm not sure I could abort any baby. My 3rd was an accident and it was difficult circumstances.. so it was discussed. Very early. But I had an extreme emotional reaction when it came down to it. I felt very attached to the baby only weeks in. So I guess even if I was told a baby would be very disabled or live in pain.. I might find it extremely hard to terminate.
But in theory I support womens right to make these choices.

If I had realised that my DD would have needed 14 operations before she was 6, the multiple ICU stays and the life that she has I'd have gone through with the termination.

I didn't because I didn't feel like I could, and while I was swithering with myself I was deliberately shown the scan screen after I'd asked not to be (the person was sacked as it turned out to be the second time they'd done that) and saw the heartbeat I just couldn't.

I actually think the guilt I'd have felt about terminating would have been less than the guilt I have now about the life inflicted on DD, and the impact that has had on my other children.

Having a disabled child myself I can't comment. It's a personal choice I'd never judge. I also had a nifty test for my 4th child. I know my limits and would not cope with one of the top duplications on top of a already disabled child. Mainly due to operatikns on top of everything else. No need to be a saint and your existing kids really need to be forefront in the choice surely?

But in our case it's not life limiting. He is a happy healthy child and brings so much joy. But he was very hard work when younger. It effected and does effect my other kids. So with the knowledge I have would I screen it out? Absolutely. But would I screen him out? No way. No way would I be without him. Never. So that's a real non answer. I really pray my kids never experience this and I would help them screen for it and support them to do so or not do so.

I had an amniocentesis at 18 weeks. My much longed for daughter had Patau's syndrome - trisomy 13, a rare genetic condition that is incompatible with life. I chose to terminate at 22 weeks. I think the decision was less 'difficult' for me because she was so catastrophically affected but hardly a day goes by when I don't miss her.
For other conditions or birth defects I think it would depend on the likely severity, how well my other children and I would cope with certain disabilities and what quality of life the child would have.
I have worked with families with severely challenged children and can only imagine how hard it must be.

I have a child with an ultra rare genetic condition.

If I had known they would have this condition I would have had a termination. I love them so much but it’s very difficult.

I know my child’s genetic disorder was de novo but I won’t have anymore children.

No I wouldn’t . I wouldn’t knowingly bring any child into the world if they were going to suffer .

I didnt have any of the tests for disabilities and certain conditions done during pregnancy except those that were not compatible with life so that I would not need to make that choice. However I have also spent 20 years working with children and young people with disabilities and learning difficulties and to be honest it was a real fear of mine because I have seen some very very difficult circumstances where the parents are hanging on by a thread due to the level of care, support and/or behaviour needs that their child has, when pregnant I was really scared of having a child with that level of need and not being able to cope with it.

Im not sure . I think there are lots of points that would come into play and I'd also fear the Drs could be wrong.

Having further children when its a genetic possibility I find very strange. I know someone who had a DD (healthy) , then DS (genetic diagnosis, life limiting but much better than it used to be). Possibility of a child having the same illness 1:4 . They went on to have 2 more which I found really irresponsible.
A colleague had 2 DS. First healthy, 2ndfrom birth, was very sickly/very poorly at times tested for a wide range of issues but nothing fit. Her husband pretty much immediately decided to get a vasectomy because he said he /they couldn't go through it again, to see your baby so ill.
He actually grew up to be a healthy young man, now married with a family. Doctors never found out what the issue was.