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?

It is yes. I spent a lot of time thinking about this after having three recurrent losses. It bordered on anxiety.

I am so sorry for your losses, ThatCampWitch

Yes it’s something me and my husband talked about a lot.

I think that’s partly because we both have people with disabilities in our families. And partly because I worked in the learning disability sector for a while.

I know that at least some of my friends had the same discussions. But I’m not sure how widespread it is.

I did a bit because I have a cousin the same age as me who is very profoundly disabled. He will never live independently or anything close. He can’t speak, he can walk a short distance, he’s incontinent. It’s been heartbreaking over the years as his parents age. It didn’t stop me having DS but I did think a lot about how I wasn’t sure how I’d cope in my aunt and uncles shoes.

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.

Yes, a little.

I have a friend whose son died after 15 months of a hideous illness. And another with a profoundly disabled child due to an issue shortly after birth.

But I thought about it more after I’d had my first, and what the effects would be to a sibling in those circumstances

I did, yes: again, am disabled myself and know first-hand how unpredictable life can be. I refused the 12 week Downs screening too.

Me too but like PP I have family members that will require life long care and have always been aware of the impact of their disability

As their disability is more common in boys it was definitely one reason I was hoping for a girl

Honestly no, we didn’t really think about it. No disabilities in our families or friendship groups so maybe that’s why.

Yes, I did. And definitely when it came to decidiing whether to have another pregnancy as an older mother.

Didn't give it a thought. He's nearly 30 now, and a joy. Lives in supported living.

We did yes, when discussing number 3. It was mainly thinking about what impact there could potentially be on our first 2 DCs were we to have a third child with a disability. Before that conversation I hadn't thought about it.

I didn't until I had a very poorly child, he's 17 now and medicine has improved to the point where he's unlikely to die young (of his disease) anymore, but the lasting effects of 16 years of chronic disease has taken its toll certainly..
I know there are people with children who have the same condition who choose to have more children and take then risk and I can't help but wonder if they are making the right decision but I know it's not my business so I stay quiet and hope for the best for them.

I didn’t want the extra tests for disabilities as after trying for years with a miscarriage along the way, I would have this hard won, much loved baby however it came. Perhaps I was naive.

A bit - the hormones made me quite anxious. The screening helped to a certain extent.

I hope you come to a decision you feel comfortable with.

I started trying to conceive in my late 30s. My auntie had downs and so I was clear in the realities for my family when looking after her. I have a medical role so aware of other conditions e.g. cerebral palsy which are unpredictable

I am naturally pessimistic and opted for additional testing around 20 weeks to check for abnormalities e.g. downs.

I also considered my natural skills and resilience and felt some conditions I could cope with and support. Whilst others would overwhelm me.

I felt the benefits outweighed the risks, also that it was a very personal decision and one to discuss with partner who had different views.

Good luck. I hope for everyone that they might be happy with or without children long term x

I thought about it far more with second child than first. Between 1st & second pregnancy I had 3 miscarriages. Then pregnancy was complicated and at risk of issues which significantly increased odds of disability.

My child as it happens is fine, but while I was going through the above, a friend also had a disabled child whom I got to know well - this was simultaneously a reality jolt seeing how much it impacts their lives, but also reassuring that the kid in question is genuinely fab, lives a great life despite disabilities and is an absolute joy to their family and friends.

Yes, I did think about it a lot prior to having kids. How you just never know how your child will end up, even with the pregnancy screening that’s available. Then had a baby born with a condition that has a 1:50,000 chance of happening.

Also the issue I had with my second pregnancy would likely be worse in a subsequent pregnancy, carrying a bigger risk of the baby being impacted and left disabled. It's been one factor (there are others) in our decision not to have a third child.

Yes I did, but as with a previous pp, I have taught in SEND schools. I knew regardless of my child’s needs I would intend to give them my all and the best life I could.
I worried (and still do) for any sadness or hardship in my child’s life but that is regardless of ability. I am grateful that we do not know what our future has in store.

Yes I did think about it, and discuss it with DH. I was teaching in a SEND unit within a primary school when I was pregnant and so I thought particularly about ASD (which was the diagnosis for the majority of pupils there) rather than physical disabilities, but we did talk about those a little too. Not that that would have made us any more prepared I don’t think.

Now DD is here I think about it even more in relation to a potential second child - our age makes it more likely - and it is definitely a factor our conversations about whether we try for another child or not. Because of the impact that would have on DD’s life not just ours, and because we’re older we would worry about leaving a child that perhaps needed support into adulthood, and whether we would be around and fit/ well enough ourselves to provide that.

I had my DD prematurely and it was only when my pregnancy suddenly became high risk that I really thought about it. With my second I thought about it quite carefully.

No. Before hand not at all. But When I was pregnant my husband was in the military, my initial tests and screening came back with such a result that I was recommended for amniocentesis as there was a high risk of abnormality , and to the extent I may not wish to continue with the pregnancy, but he was away and uncontactable when it needed to be done.

I elected not to have it and simply take my chance, as there was no action I’d ever take with him away, , so I declined and simply said to the consultant, I will love her whatever, I won’t have it.

She was born healthy with no disabilities. But no I didn’t spend a lot of time thinking about it before hand, and quite frankly I didn’t spend a lot of time thinking about it when they told me there was a high risk, There was no action I would ever have taken at that stage with him away.

I did clearly have to tell my husband when he returned what our risks were and my decision to decline , why and said we will love her whatever, and he nodded and that was it, we simply never discussed it again.

Yes when I was 14 to about 25 due to physical disability from birth. Not massive but not minor.

Then didn't, had been through years and years of dealing with whole thing and stopped thinking about that bit.

I did happen to marry a man with very very good solid bits where line are wonky. Subconscious or not no idea! I certainly had noticed v excellent those bits.

Anyway didn't think when had kids they fine that way.

Both had issues in other ways though some from his side! Which I hadn't even known about.. Not massive but a lot of docs bit of surgery etc when small which is upsetting.

It's a lottery for most, in the end.

Mine looked probably inherited btw but no one sure.