Before you had children, did you spend much time thinking what life would be like if your child was significantly disabled?

[fiverabbitsplease]

I'm curious about this, because I am disabled since I was a kid, but in a lot of ways have had a very 'normal' life. However, I can't work full time which is obviously limiting, and can't safely become pregnant and carry a baby without serious risk to me or the baby - so my life is profoundly affected by my disability. It has shaped things in ways I didn't want, although I am lucky to have a very good life, relationship, friendships etc.

I also have a sibling with different disabilities who can't live independently.

I'm pretty sure my life experiences mean I think a lot about what would happen (if I just risked everything to do with my own health, and tried to conceive) if my baby was disabled. I'm really struggling with not being able to have a child of my own as I get into late thirties, so my mind is going down all sorts of wonderings about what would potentially happen if I threw caution to the winds and hope for a good outcome.

Anyway, that made me curious about how much the average "healthy" couple think about disability before the try for a baby? Is it something you thought about at all?

Dh and I talked about wrt the screening, We felt we would cope. Which was fortunate as all three of ours have a disability, particularly our second child who will never live independently or have anything approaching the life I hoped he'd have.

However, hand on heart, after years of grief, struggle and sadness, my second child makes me laugh more than anyone else in the world. I was mucking about with him yesterday evening and told me "you are weird - like a deranged fucking comedian". He is 11, totally different to anyone else on the planet and I feel as though I got lucky because everyone else is a bit boring by comparison

"I honestly love my role caring for my DS. And my DS is fantastic and gives me so much too. It can be brutally hard and relentless, I ‘m not taking away from that. But there is something about being away from all the superficiality of life, and being forced to just make sure your child has a chance of happiness, by just pure constant care and selflessness, that is really life affirming. It’s what life is all about. Love I guess."

Your post brought a tear to my eye CherryBlossomAutumn. Thank you. That's where I'm at too

Also, we had lots of people assume we wouldn't have another child afyer dc2 because he is so disabled.

DH pointed out that they were basically saying that it would be awful if we had another child like him.

Which is offensive and wrong.

Yes I thought about it because I’m on medication that can cause potentially a serious condition to a developing baby so I had to have pre-conception counselling from my consultants. When I was pregnant I was scanned every 4 weeks.

As part of my job I work with children with either lifelong or life limiting conditions and disabilities that have a huge negative impact on their quality of life, and me and DH had always said that if the 12 week scan showed any anomalies or any we’re picked up in an Amniocentesis then we would terminate.

We had this agreement for both pregnancies but thankfully both children were born healthy.

I thought about autism and honestly thought I would not be able to cope with it.
Life had other ideas for me and it turns out that I can indeed cope with it.

We thought a lot about it as we both worked with children with disabilities. We even went as far as making sure our new home (pre kids!) was accessible with a downstairs bathroom and bedroom, "just in case".
In the event our DC are healthy and independent, one does have autism but copes well with it.
We didn't have any tests when pregnant as it wouldn't have altered our plans.

No, I didn’t consider it at all. I had my first child at 22yo and had never really known anyone with disabilities so I didn’t give it much thought. I was lucky that all my children were born healthy. However since I started working in a nursery I’ve realised how many disabilities children can have ranging from mild to quite life changing for both children and parents and I think I would certainly be more concerned now if I got pregnant as to how we would manage if a child was born with a disability.

I thought about it, I have 5 dc and with each pregnancy I was aware that I had been lucky previously but might not be this time. We had all the tests which we were offered and were realistic with each other about what we though we could and couldn’t cope with.
For instance I wouldn’t have ended the pregnancy if the baby had ds when j was younger but with my last at 37 I would have done because the impact on other dc and possibly lifetime care.

I grew up with a relative with severe disabilities requiring life long care so it's always been something I've been aware of as a possibility.

There was an unpleasant moment during DS1's birth where I had a lucid moment of being transferred room in a wheel chair late in labour and remembering that my relatives disabilities being caused by a poor birth and his mother left seated in a wheelchair while pushing. Not a thought you want when your long long labour starts spiraling out of control!
Fortunately no lasting damage occurred.

As it happens DS has "high functioning" autism. It does affect life, but he should have good prospects and some adapting around it goes a long way. I am very much aware that this is the easy end of family life with disability, although it has plenty enough challenge.

Yes we talked about it at length as i am a carrier of a condition and we had to have certain tests and make decisions about continuing with pregnancies.

My husband carries a gene that makes him highly likely to get an aggressive cancer we wanted to plan our family and would have considered genetically screened eggs and sperm. But our son was a surprise and we don't worry about the what ifs we will face them if and when it happens.

Have you considered a serogate OP if you are physically capable of raising a child it may be an option

I thought about it vaguely but I was very naive regarding everything to do with becoming a parent and decided to just hope for the best. Now I have my (wonderful) daughter and I don't want a second for lots of reasons. One of those is that I know I absolutely would not cope with a severely disabled child.

Not at all for child 1 and 2, young and ignorant, didn't give it any thought. Now we are a bit older (30s) it's one of (many, to be fair) reasons we won't consider a third. I realise now with hindsight that every time you get pregnant you are rolling the dice, that's fine for 1 or 2
children, but to roll it for a 3rd doesn't just affect DH and I but our other children. So it's a major reason stopping us trying for more, especially as we aren't the spring chickens we were when we had our 2.

I don't have kids and the risk of having a child with significant disabilities is one (but not the main) reason why. Having kids is risky in lots of ways though. Essentially you have no idea what kind of child you're going to get, or what kind of parents you and your partner will be. As I'm very risk adverse and ambivalent about having kids at best, it didn't seem worth the risk to me.

Some people cope with these things and others not so much.
I'm clearly a weak person as comments like, "You wouldn't change him thought would you?" bother me. Honestly? Yes, I bloody would!

I think about it a lot more now I'm pregnant with DC2 because the stakes seem a lot higher now already having a child, and worrying about how it would affect her, not just me and DH. Also we are obviously older and that's another concern.

Yes I thought about it an awful lot, to point where its probably one of the main reason I decided not to try to get pregnant as an older woman. I see lots of young people with severe life limiting disabilities in work and it made me very anxious about trying for a baby; it likely affected my judgement thinking those particular disabilities were a lot more common than they actually are.

As an older mother with our second child - yes - we went down the testing route. From scans we knew he had talipes early on but then also had amniocentisis. For me personally it was how it would affect our other child if we had a disabled child, having to give up work and the practicalities etc.

Once you go down that path you can't stop. We didn't have to make any decisions as the tests came back negative and I am not sure what we would have done tbh.

I thought about it and decided that I’d have the Amniocentesis test and make a decision. I don’t think I could have coped with a profoundly disabled child, which I realise sounds incredibly selfish and is not meant offensively. There are serious addiction problems in my family and this also put me off. I think I am possibly overly concerned about this, but everywhere I look on my side, there are major issues.

We took out Critical Illness Cover that would pay out a significant lump sum in the even that either of us were diagnosed with a serious illness, or we had a child that was born with a disability, or became disabled prior to their 18th birthday.
Is there a policy that would pay for the congenital issues? I looked at the market in detail when I had mine, and could not find anything appropriate. Do you mind sharing details which company you went with?

I really want to have a third child, but don't have an appropriate partner, so will have to go solo, and a possibility of having a disabled child is something that is constantly on my mind. My oldest has a mild ASD, but I have come across children with much more severe versions of it during our diagnostic journey, and I am not sure I'd cope with it. I am close to 40, and looking now to find a consultant who would give me a truthful estimate of odds - spoke to two so far and had two completely opposite opinions.

Only when I was pregnant with DC3. DC1&2 are very close in age. DC1 was in hospital a lot during first year but DC2 was not. When I was early pregnant with DC3, DC1 was diagnosed with autism (ages 3). However, I was already pregnant and so that was that. But I was very anxious and worried that when I died, DC2 could potentially have to care for two siblings.

DC4 was not planned, and I was unable to enjoy the pregnancy due to (shock) anxiety. However, it never crossed my mind to terminate as we have a happy home life, and I refused all testing because I did not want to have further anxiety based on 'possibilities.'

Thankfully everything is ok and the ASD is manageable (so far).

It is something I considered, and will worry about again as we age and continue to want another DC in to our late thirties.

My DM and I have an auto immune disease which goes down the female line (biological sex turns out to be real, who knew) and I knew if I had a DD she’d be at risk as she got older.

I’m pretty sure DFIL is autistic, and so I wondered if my DC might be.

I didn’t let such thoughts put me off, but I did worry about how we’d deal with it if it happened. I actually worry about it even more now, as DS has nearly broken us and he is (so far, thanks be to God) healthy and able bodied.

If I thought having a DC might kill me or them, or that they had a strong likelihood of being severely disabled, then I don’t think I would do it, no.

Op I have had a very late loss. Baby wasn't viable for life and would have been severely disabled if baby has some how manage to survive however he didn't. I think about him every single day. What,ifs and buts. It's haunting.

That, along with a lot of miscarriages made me often think about quality of life and what dreams my children would have and how those dreams would be taken away from something that was a condition that put them in the severely disabled category.

I also because I had a high chance of losing a another baby to the same condition, the fact that I won't live forever and what would happen to them at the point of my death really gave me pause. To be frank it gives me nightmares leaving any child of mine let alone, let alone one that would desperately need me to live.

I think it would depend on the chances/ratio of the child being born healthy and quality of life if the worst was to happen.

I would also say that burying a baby is something that you can't imagine until your there. All you want for your kids is that they are happy and not in pain. The rest of it is noise.

I have had 8 losses in total, and have managed to give birth to one healthy baby so the odds weren't in my favour but I bucked the odds. I can't answer this for you but I would look at numbers and chances and if you can deal with the risk.

Everyone gets to decide your own risk tolerance. Your the one who has to live with the choices and which ever choice you make i hope you find peace 💐

I didn’t apart from thinking I couldn’t cope if I did have a child with a disability which now I have one seems like such an awful way to have thought. My son is a teenager now and he’s amazing and has changed me massively for the better