Will another baby ruin our life?

Our situation is exactly the same as yours. Daughter was born with a chromosome disorder inherited from one of us (parent has no symptoms). Her difficulties are at the milder end of the scale but we were told that another child had a 50 percent chance of also inheriting and they could be anywhere on the scale.

We didn't have another, but that's a lot to do with me having her late in life, and I'd had PND and wouldn't have even been ready for another for at least 5 years. But that aside I don't think we'd have taken the risk. If we knew the next child wouldn't have difficulties any worse than our daughter, we might have gone there, but that's obviously not possible to say.

I'm very happy with one child, she gets all our love and attention, but I'm sad for her at times, because she'd be an amazing big sister. I'm sorry, it's such a hard decision. X

Honestly OP
If you ask this question to shine they will say don't do it.
The only answer you can seriously consider is one of someone who is in that position.

If you go for a second, the way I see it you have 3 likely outcomes:

1. Second child also has the disability but it is more severe. You can’t afford to provide the care for both and given the second’s disability is more severe, your DD suffers as she doesn’t get the support she gets now.
2. second child has the disability and it is the same severity as DD’s. You still can’t afford additional care though. So do you cut back your DD’s existing care and support or do you just not give the second child that support at all? It’s a no-win situation.
3. The second child doesn’t have the disability but is your DD’s carer. You’ve had the second child only to make sure your DD isn’t alone when you and DH die. There will be the heavy implication from both of you that second child should look after DD when you’re gone. Would this scenario influence inheritance too? E.g you’re more likely to leave DD more for her care but less to her able bodied sibling? It’s a breeding ground for second child to resent you and feel they weren’t wanted for them but just as support for your DD.

DC1 most likely wouldn't be able to care for DC2 then I'd yourself and partner passed?

I wouldn't mostly due to the fact your husband won't take any responsibility in the decision.

That suggests he might, if things don't turn out positively, claim another baby was you choice not his allowing him to, at worse, leave or at best expect you to take on all the extra care required.

I can't answer for you, but I can give my own POV.

We have one child of a similar age who is autistic with quite high support needs. Like you we've also fought for what he needs including paying for private therapies as well as the additional cost of things like 1:1 swimming lessons, employing someone to support him at Cubs etc.

If I could have another child like him (similar needs, interests, someone who would fit right in), I'd do it in a heartbeat. But there is every chance that may not happen. As I see it, there are the following scenarios and outcomes

1. Similar child, fits in well, but time/money/attention decreases for existing child by 50%

1. Neurotypical child - again resources reduce, second child may end up becoming a carer to the first, their lifestyle/experiences etc are also likely to be limited due to first child.

1. Another autistic child with opposite needs - neither child is happy, resources split again too

1. A child born with some other type of disability- again, impact on first child to consider, splitting of resources etc

For us, that's not a risk we've been willing or wanting to make, so we are sticking with one and having a good standard of living now, but also planning for his future - savings, junior pension etc.

This. I understand you're worried about her being lonely in the future, and lots of people gets jitters towards the end of their 30s about whether they're making the right decision. But you could ended up making things much worse for your family. Turn it round in your head. You're not backing out of something due to fear, you're deciding to pour everything you have into making an amazing future for her.

Can’t you have pre implantation testing? A clinical geneticist should be able to talk to you about this if it’s possible. Did you see one after DDs diagnosis?
Then you aren’t terminating but selecting an embryo to ensure it’s not carrying that gene. Time isn’t on your side but it might be an option.

I have a disabled son, life became extremely challenging immediately and was for a number of years very hard. I ruled out having an another child as 100% of my focus was on Ds and I knew we didn't have enough to give to a second child and that ds wouldn't cope.

When he got to 5 he got a lot easier, I was too old to have a second child by then but I did think it would have been nice for him.

However fast forward five years and things have deteriorated and I'm glad it's just him tbh. As he needs me.

I personally wouldn't.

If the second child has a disability your DD could end up spending her life being a carer if the second child doesn’t have a disability they could end up becoming a carer for your older DD. You say your Dd would be an amazing older sister, would she feel this way if in 50 years she’s still responsible for a younger sibling?

50% risk is incredibly high, honestly I couldn’t in good conscience bring a child into this world knowing that they would be having a difficult time from the get go or may need lifelong help. If it were me in your shoes I would be focusing all my resources on my existing child and trying to make sure I’ve safeguarded her future as well.

Your reasons to have another child are all to benefit your DD rather than wanting the child as an individual this is not fair on anyone that you bring into the world.

You’d not be making the decision based on ‘fear of the worst’: a 50% chance of the disability makes it likely and you have decided against screening/termination to avoid it. You’ve not got resources to provide the support you’d like to should DC2 have the disability.

Your reasons for DC2 are not good ones.

I think it is a positive reason. The reason is you’re prioritising your existing child and ensuring she has the best life possible. That’s commendable IMO.

Could you pursue ivf and genetic testing?

Here is a resounding reason to say no.

Giving your DD a sibling and not being alone when you die are awful reasons to have another. She might not like having a sibling, and what happens if her sibling is severely disabled? And noone is alone when parents die - they will have their own family and friends by then. Millions of stories are on here about how only one sibling ever bothered to look after elderly parents, too.

You are only just recovering from life changing birth injuries, too, can you face that again, or worse, but this time with two disabled kids to care for?

Also remember that women still die in pregnancy and childbirth. How would your DD cope with losing you? How would DH and DD cope with another disabled child but without you?

I can see what you’re saying but you’ve also said you wouldn’t be able to give another child the same level of care.

It is completely unfair of your husband to say ‘it’s your choice’ when such a decision will have a huge impact on several lives. You aren’t buying a new dishwasher.

Given what you have written, another child sounds off the cards. Your existing child demands a lot of time, money and flexibility which you admit you couldn’t give a second child.

Absolutely this. You need to be having it for you. Assume she hates the sibling, they have no proper relationship when they’re older and you absolutely have to halve the attention you give her. Two is much harder than one.

You say the chance of disability is 50%. Not only is that very high but with your age, there is a very high chance of more disabilities. And this is assuming it doesn’t take years to conceive. Honestly I wouldn’t in this situation.

If you take the disability aspect out, your reason for another child is all to do with your DD. She'd make an amazing big sister? There would be someone there for her when you and DH are gone? Not, because you'd love another child?

That said, love isn't enough. The disability, the 50% and the fact that you can't give a second child the same treatment is a big no.

Om sorry to sound awful, but if you can't afford to offer a second child the same level of care should they have the same or worse disability as dd1 then I don't think you should have another child.

You are already favouring your dd in a 2 child scenario which would be horrifically unfair on another child.

Youd be crazy to have another child knowing how significantly it could impact your existing child.