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?

I didn't spend time thinking about it, except briefly when in my antenatal class, we were asked to write a list of our biggest fears for the birth (I can't think why now!! Maybe so they could reassure us?). At the top of my list was that they would be poorly or disabled. But I didn't actually think it was going to happen.

My son is now eight years old, he has cerebral palsy, and is the light of my life. He's my only child. All I want is for him to have the best life ever, it's certainly had a major effect on my own life (I'm absolutely knackered ha ha) but if he's happy (and he is) then I'm happy .

@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?

We did but I think I thought a hell of a lot more about having children before making the decision and trying than most. And then a struggle with infertility made it even more of a focus. We really thought all possibilities through

Never crossed my mind till my 2nd child was born with significant intellectual disabilities. The shock wore off and I couldn't love him more. In my head we are adults who have been thrown this and are well able to give him the love and care he deserves.

He will never be able to type and articulate like you though op

I got pregnant in my early 30s and other than the vague "we wouldn't abort for DS" we didn't.
We're fortunate in that DSs wonky chromosomes have only resulted at 6 in needing o2 and tube feeding (partly) and some delays developmentally but he's in mainstream and average academically. In the early years we were told he'd be much worse and in fact had the number of chromosomes affected been higher, he'd be much much more complex.

So when I conceived twins in my late 30s I thought a lot more about it but we still didn't really talk, DH is the "deal with it if it happens" type

I did, because I was a first time mother in her 40s, and naturally pessimistic. Have you considered surrogacy for you?

Owlinatree just read your post, I'm so sorry for what you went through xx

We did discuss the possibilities of having a disabled child and as we had our children up to our late 30's, we knew we would have higher chance of issues. With the latest two we were offered further testing based on our ages alone. But we decided against the more evasive testing the one with a needle, to protect our baby.

To date our four children are fine. Ionically it was me who is now in a wheelchair in my late 40's due to a rare neurology condition, nothing I did wrong, just one of those things.

Like I use to say 'We are all one accident or illness away from a disabilities' Not that I ever expected to happen to me !

No life is guaranteed to be perfect and who gets to say what a happy life looks like. If nothing else, the pandemic has shown us how precious our families are, and no illness or condition changes that

Yes I did. We had genetic testing before trying to conceive to reduce the risk and I had the NIPT blood test at 10 weeks. Obviously that doesn't rule everything out but I wanted to reduce the risk.

I did. Through my pregnancy and during the birth in case of oxygen deprivation or brain injuries (I'm so sorry for those who have experienced it). It is one of the (admittedly less significant) reasons we stopped at one.

I never thought that I would have an autistic child or that I would end up disabled partly through getting pregnant & giving birth yet both happened. I knew nothing about autism before ds was diagnosed & then I was diagnosed 6 years later. I think there should be more information during pregnancy about the signs that a child could be autistic, for the many other invisible disabilities & about how interventions during labour & birth can increase the chances of further interventions & then the increased risk of things like autism because of prematurity, C section etc.

@Nat6999

I never thought that I would have an autistic child or that I would end up disabled partly through getting pregnant & giving birth yet both happened. I knew nothing about autism before ds was diagnosed & then I was diagnosed 6 years later. I think there should be more information during pregnancy about the signs that a child could be autistic, for the many other invisible disabilities & about how interventions during labour & birth can increase the chances of further interventions & then the increased risk of things like autism because of prematurity, C section etc.

Personally I think I disagree To me, it would just be another thing to worry about about the many other things that can happen in life and pregnancy. I had forceps but didn't have much choice so no point thinking about things that can happen from that etc But appreciate others may have different views

Thank you for the kind messages. We have been lucky enough to go on to have more children.

I never gave it a thought - I was pregnant at 16 and just expected a perfect baby - which I did get.

... but 22 years later we found out that me and her Dad are both carriers of a faulty gene and she has a degenerative muscle wasting disease.

It was a complete shock and she now can't walk and uses a wheelchair.

Because it's degenerative it has come in small increments but it is still a big shock seeing your child in a wheelchair etc.

She's gone on to get married and have two children - but it all became too much for her husband and he left her.

Me and my wonderful husband do whatever we can to help but it's so so hard.

Got no choice but to just "get on with it" though - isn't that we all do?

I have no children (nor have I tried to have any yet!) but it is certainly something that I have thought about. Every so often disabled children and their families will pop up on a Facebook or Instagram video or something and I always watch and read about them. No idea what I’d do in a situation where I had to make a choice. it’s impossible to imagine how I’d feel and how I’d cope. But, to answer your question, yes it is something I think about. Sending love and good wishes to anyone on this thread who needs it x

@Samcro

Never thought it would happen to me. When it did it was a shock. 20 odd years later , I accept it and can't imagine anything different.

Snap

The worst thing I worried about was ds being born with hip dysplasia like me, had I known that I was autistic & the strong genetic link for autism, I wouldn't have had children or got married. Ds is the child of two disabled parents, exh was diagnosed with MS when I was 7 months pregnant & I developed Fibromyalgia & ME/CFS as a result of me nearly dying from pre eclampsia & hellp syndrome after I had ds. I feel terribly guilty landing him with two disabled parents & how much his life will be affected having to care for both of us.

DD1 (12yrs) I didn't think about it at all, I assumed she would be perfect. She hasn't got any disabilities as far as we know now.

DD2 (3.5yrs) I worried a lot more as I had more experience of meeting other families with children with additional needs by her pregnancy. She has mild-moderate global developmental delay and possible autism. She makes slow but constant progress and if she does have autism seems to be less affected than other children. She brings so much joy to our lives, she's truly made me appreciate the tiny milestones she makes. She has hypermobility, didn't walk till pushing 3 and is just learning to jump now. It's also a real roller coaster navigating all the forms, appointments, education stuff etc.

I did want a third child at one point but definitely wouldn't now.

The fact is ultrasounds and tests in pregnancy don't pick up many disabilities.

We're all an accident or illness away from becoming disabled too.

I will answer this honestly because you asked a honest question. But Yes and consequently decided it wasn't a risk I wanted to take and therefore decided no children. I valued my independence too much to be A full time carer/ be limited in my life by my child but it wasn't the only reason. But it's just one of the costs/risks of having children and people should make informed decisions looking at all the possible scenarios from death in childbirth to giving birth to the next Marie curie (something to be really proud of) or Christiano Ronaldo (basically no financial worries for life) or having a child grow into a drug addict or career criminal. For example my family have some genetic conditions that I would want to risk passing on either they could cause a disability so I would considered this too before replicating half my genes.

We never discussed it. I think it had crossed my mind several times before I got pregnant though. Recently DC had an autism diagnosis. I understand if it was talked about more, then it would be more worry when pregnant but honestly I do wish there was more awareness for special needs parents. People seem to have no idea what to say to me and I’m alienated by a lot of my friends.
I don’t think some people really want to think about the struggles that special needs parents go through on a daily basis and they should know and be aware just generally in society.
I think most people thought that when we got the diagnosis that our journey was done, they have no idea of the daily struggles that can occur and the lack of support from NHS and local authority )my area, I know not all the same for all).
OP I’m not sure if I have digressed from your original question. Have you got % chance from a geneticist? Perhaps that could help with your decision.

It was hard not to think about it, really. Growing up, one of my dearest friends had Duchenne muscular dystrophy. He lost the ability to walk around the age of 5 and spent the rest of his life in a motorised wheelchair. It is a hideous progressive condition with a genetic link that no one in their family could have predicted (even assuming the technology to do so existed before we were born, as I'm pretty sure it did not.)

His parents got on with things even though the progression of the disease meant more and more intensive assistance was necessary. They cared for him until the end of his life and even as a child I saw how that impacted them -- financially, emotionally, physically.

And it was always in my mind that in their family, this was a wild card situation -- no one else in their family had, or has, this disease. Now genetic testing is available and our generation are all being tested for it, but at the time, they had no idea.

So yes, I did think about what would happen if my child was severely disabled.

Yes I did and it’s why I had my last child at 33. I know loads have babies much later but after 2 healthy babies I felt I didn’t want to push my luck.

I have a disability that is genetic - 50/50 chance of any child having it.

I live an independent life and work full time, but the disability has not added anything positive to my life - just multiple surgeries (some more complex than others) with potentially more to come. I've certainly cost the NHS a lot of money - more than my fair share!

I've been to genetic counselling and have been offered PIGD (IVF with genetic screening of the embryos) which I'd take up if I ever have children because I'd prefer to give them the best chances possible.

What I do find baffling though is that the NHS will only pay for PIGD for one healthy baby. If you want to have a second then you can either go private or take your chances. However, treating the genetic condition is many times more expensive than just offering PIGD to prevent it in the first place, so it's a bit of a false economy

The thought of a severe disability like cerebral palsy or autism scares me though - I don't think I'd be able to cope, physically or emotionally. I could cope with a relatively simple disability with no cognitive impairment (eg profound deafness) but it's not like you get to pick and choose!

I have a friend who has a child with a severe genetic problem that has caused all kinds of mental and learning issues along with some physical issues- to the extent that she is unable to communicate in any way, has seizures daily, is doubly incontinent and never even smiles or shows any warmth to anyone. She is totally isolated from the world and lives inside herself with no interest in anything, no pleasure in anything and no way to reach her. She is a young adult now. It is terrible for her and the family.

I though about it a great deal when I had DS2 because I was almost 40 and worried about the effect my age might have. I have no idea how their family have coped. It has taken over their lives dealing with the daily managing and living with everything the disability has brought- not only in terms of stress but also the grief for their daughter's lost life and all their dreams for her happiness and the impact on their other children.

I don't think I could have coped and don't know what I would have done.

We have four children and didn't really think about it until we had ds2 and were told he could have cystic fibrosis. We had to wait until he was a month old to find out for definite that he did not have it. So in that month we did have a lot of worry about what life might be like if he had had it.

I thought about it a bit but not over much. I thought about Down's syndrome because I have a cousin with that and because I was quite old when I had my children (36 and 38).

I decided not to have amniocentesis to check. That was partly because of the risk of miscarriage and partly because I didn't want to be in the position of having to decide what to do if I found out that the baby had Downs. I don't think I could have had an abortion so thought it was probably better not to know.