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 did, I always had a bit of a sense of having a disabled child. However I’m a worrier so I put it down to that. Also an older parent.

I also used to worry that I wouldn’t be able to cope. I had a scan for Down’s syndrome, however I really have no idea what I would have done if it came back high risk. I think I just wanted to know.

Then my second child did turn out to be quite severely autistic and very high needs. I’ve had to completely readjust, put career on hold. I had no support and husband useless to be honest.

However 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.

I didn’t even consider it. I conceived immediately and thought about if it would be a boy or a girl, have blonde hair or brown, if they’d like sport or art, would they be a vet or a teacher etc never did I ever think about disabilities.
I was told when ds was 6 months he had red flags. At 2 I was told he’s autistic, we had lots of support. More diagnosis’s, surgery, hospital stays over the years. He’s now 11 and I care for him full time.
I’m pregnant and it’s ALL I think about. What if she’s autistic? What if she has bowel problems? What if she can’t talk? What if she can’t make friends? It’s a very, very different experience.

Yes. My sister had cystic fibrosis and my brother had a spinal injury. It was difficult caring for them and losing them both as a child and it made me wonder how I'd cope if my child was disabled too. I've now had a baby after multiple losses and all I care about is that she is alive, and we can cope with whatever she throws our way.

Absolutely; it’s why we didn’t have a second child. Our DD’s cousin has autism and their parents have a very tough life. I didn’t want that for our family.

@SheikhMaraca

Yes, we discussed it at length when we made life assurance arrangements for our first mortgage soon after we were married.

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.

I’ll be honest and say that I wonder why more people don’t do this as it is part of every mortgage discussion I have ever had, so very much a normal thing to do.

Insuring to make sure financial hardship doesn't make life any more difficult that it needs too be sounds very sensible: I think that would reduce one massive fear factor. However, on googling e.g. children's critical illness cover, most exclude anything found in the first 30 days and are capped at £50k which doesn't seem enough to give you the support I think I would need. Did you go somewhere specific for this?

If I'm being honest, it didn't really occur to me.

Not before I had DS but it was a big factor as to why I only stuck with one child. DS has no disabilities and I initially struggled with motherhood, I knew I just couldn't cope if I had more children and they had disabilities.

I didn't really dwell on it with my first, but I thought more seriously about it with my subsequent children.

That said, I do have one cousin with a very limiting disability (she's entirely non verbal, and has never walked) but most disabled people I know live completely full lives, and my closest disabled friend (who has spina bifida) is very vocal about how her disability isn't the tragedy that other people imagine it must be. I obviously understand that she doesn't speak for all disabled people though.

Yes. I had been a carer for years and was very hesitant about becoming one again. I thought really hard about it.

No, it never crossed my mind. I was young, healthy and arrogant and just assumed I'd have a healthy baby. As it was, DC1 was born very early and very ill. There was a chance he'd have lasting disabilities but I didn't care, I just wanted him to live. He's 7 now and has no disabilities.
I was more realistic during my subsequent pregnancies. I decided beforehand that I would have a termination for any severe physical disabilities which may be diagnosed during pregnancy. A child born with disabilities apparent after birth would have been welcomed and loved.
My OH has always thought about the possibility of having a disabled child and I believe he would not have terminated in any case (though he has never said this out loud to me).

Yes, a lot. It made me very fearful and put me off TTC.

Yes and it's part of the reason I won't be having children.

I did give it some thought. I had all the screening tests, including an amnio for DC2 as she was identified as high risk from the screening. Thankfully she was clear, but I would probably have aborted if the results had been different. Being a parent is hard enough with a non disabled child!

Having said that, I do realise that many conditions can't be screened for. My cousin has schizophrenia which has a massive impact on his life (and those around him) and didn't emerge until he was in his late teens.

It’s one of the reasons I’m stopping at one child. (Not the only reason)

I do know two people with profoundly disabled children though (one born with an extremely rare genetic condition, one suffered brain damage due to oxygen deprivation at birth) so I’m realistic about that fact that it can and does happen & the impact it would have.

MIL thinks I’m utterly ridiculous. I think it’s just sensible to consider if / how you would cope with a disabled child.

Yes, lots.

I'm a HCP working in paediatrics for many years. I've seen so many children with profound disabilities and children dying it's had a huge effect on me. The parents I have met over the years have shown superhuman strength, bravery and do not get anywhere near the support they deserve.

I breathed a sigh of relief at the 20 week scan when they could see 4 chambers of the heart and I could see strong legs kicking, (despite the many disabilities cannot be picked up, at least 2 out of 100 conditions of my mind were ruled out!) My mind immediately goes to the most severe form of each disability I have seen.

In fact I struggled to accept my pregnancy and didn't buy a cot/ baby clothes etc until 36 weeks. That is something I have noticed with my colleagues too.

I have 2dc, both healthy and I have found parenting much harder than I though it would be. It's given me a whole new respect for how hard parents work if their child has a disability and made me realise how isolating it must be.

I did, we talked about it before the downs screening. And especially with my first, as we found out dh is a cystic fibrosis carrier so I went for urgent testing for me but in the interim looked up everything about CF. Then with my 3rd as I’m late 30s it’s sensible to be aware there is a higher risk. It will probably be a factor in deciding not to have a 4th, as it’s one extra risk to think through given I’d be over 40 when we will have 3 others.

I did to an extent, I had the NIPT (Harmony) privately at 10 weeks to find out about certain conditions, having watched two close friends go through TMFR after an Edwards Syndrome diagnosis. We said we wouldn’t necessarily abort for DS or another condition but wanted to have as much time as possible to research and be prepared.

DS has mild GDD but is progressing well. I became very ill when he was a baby and am still unwell. We know that we wouldn’t cope with another child, especially one with their own additional needs so we aren’t having more DC.

Yes I did, because have a sibling with severe disabilities so was very aware of the possibility.

I do yes. I'm getting older obviously, the older you get the more riskier it becomes and the more likely you'll have a baby with a disability of some sort. It's not my main reason though to not have children, it's more of a concern.

My partner doesn't, but he's not like me. I think about every possibility that could happen and how we'd handle it, financially, emotionally etc. He's more of a wing it kind of person.

Didn't give a second thought if I'm being honest.

This is a tricky question to answer. For me the actual disability would be taken into account. If my baby was diagnosed with physical impairments of any kind, there would be no question of aborting, I would carry on and deliver as originally planned. However if there was the risk of cognitive delays or mental health issues that were severe enough, I might end up researching care homes. It depends on so many things really- hard to say for sure.

Didn't really think about it. I suppose you think it won't happen to you.
I didn't know dd had a disability at birth,she just didn't meet her milestones & that started us on the long road of diagnosis & adapting to a very different life from what we thought.
Dd is now 14,has a severe learning disability & is non verbal. Its been hard but she is amazing & I wouldn't change her for the world but I would change the world for her,if I could.

I had my first at 37 so knew having a child with disabilities was a higher risk. I had a close friend whose two children had a degenerative, life-limiting genetic disorder so it was something I had considered and DH and I talked about it at length.
Ex dh had male infertility and we had accepted not having children, he then left me for ow (with kids) which hurt as he had refused to consider adoption saying he didn't want to raise someone else child!!! When I married dh and we found out I was pregnant we were in agreement that we would accept whatever happened. I didn't have a blood test to check my risk for Downs as I knew it was likely to be high and I had decided I wouldn't have an amnio.
DC 1 had no issues, dc 2 has severe learning difficulties and autism.

I knew there was a family history on OH's side of certain conditions so whilst I did 'consider' it, I was naive and it was very much a case of 'it won't happen to us.' Very stupid of me.

Our eldest has a disability, plus some co-morbidities and he's still under assessment for more. It's possibly as a result of the family history or possibly because of medications I had to take during pregnancy. Or maybe just because!

It means life is fucking hard. But I'm very aware that we have it so much easier than others, we are very lucky that in a physical sense he is generally healthy apart from asthma and some allergies. And he'll be able to live independently as an adult, albeit with some struggles I'm sure!

In my first pregnancy we (rather naively) thought two parents one child, we’ll manage whatever their needs.

However the idea of severe lifelong care needs was a big factor in decision making about having a second.