Will another baby ruin our life?

[Goeasyonm]

Please help me decide whether to have another baby or not. DH is not helpful because he insists it’s ultimately my choice and he will go with what I want, but I know he would be happy if we stopped at DD6, who is our only child.

DD6 has a physical disability because she inherited a gene that either DH or I have (we don’t know which of us has the gene). The disability ranges in severity but hers is at the mid point of the spectrum. I would love her to have a sibling but I know that there’s a) a 50% chance of a baby having the same disability (potentially more severe as well) and b) a higher chance of a baby having some other type of disability or a complicated pregnancy due to my age (I’m 39).

Reasons why I am worried about another child:

1. I know that the life we have with DD has been hard won. We fought so hard for DD to have as normal a life as possible and have made a lot of sacrifices to make that happen. But it was all done for her whereas I feel that if we had another disabled child the same sacrifices would be done to her. It would affect her quality of life and I just know in my heart I would probably regret negatively affecting her in that way.
2. If we had another disabled child DD might end up being their carer when we’re gone and I don’t want that for her.
3. I had 3 miscarriages before DD, a difficult pregnancy and a horrible birth. Since DD was born I’ve had 3 corrective surgeries as a result of a traumatic birth. The last surgery was a few weeks ago and we’ve only just been given the all clear to try and conceive. Another baby could be a similar experience.

Reasons for having another child:

1. The child might not have a disability - there’s a 50% chance they won’t have DD’s disability and, even if they did, it might not be at the severe end of the spectrum.
2. DD would be an amazing older sister.
3. DD would have other family left when DH and I die. I don’t want her to be left alone in the world or to end up being responsible for us when we’re elderly.

Pregnancy screening isn’t an option for us because we would never terminate due to a disability. It scares me that if we had been able to screen for this disability while I was pregnant with DD we might have chosen to terminate and the love of my life would never have been born.

You are being unreasonable - have another child
You are not being unreasonable - don’t have another child

Until you know it’s not you isn’t it hanging over you anyway? If it is you it might be good to have time to make peace with it.

If you could get comfortable with it I think embryo screening as suggested by PPs would be my first choice in your position.

@GingerPirate sound advice, exactly what she needs

I don’t think it would be selfish of DD or anyone else who has a disability to have a child even if there is a strong possibility they will be passing it on. Saying I shouldn’t have a child in case I pass on the disability is very different to saying that I shouldn’t have another child in case they have a disability that affects my existing child. I’m not sure I’ve articulated myself well there but hopefully you understand what I am trying to say.

I don't know what's the genetic condition affecting your DD, but often parents carrying a recessive/mutating gene, means nothing to their health. They'll have normal lives without being affected at all.

Often, the problem arises when 2 parents carry the same recessive gene have 50% chance of that gene being dominant in their child. I'm surprised that if your DD has a genetic condition, the NHS did not refer you to a children's genetic clinic so as parents, you understood the gene and everything that's known about it.

Life is not fair, OP. You have a wonderful daughter that one day will be able to live an independent life. She may need a kidney, this is why kidney transplants waiting lists are for, even both you are not compatible. To put your mind at ease a bit more on this issue, it's extremely unlikely that your DH or you (as her parents), won't be compatible to give her a live transplant when she needs it.

It doesn't sounds like you're making the decision out of fear. From your post I get the impression you're not having another child out of mature considerations for the negative impact it could have on your family in it's current configuration.

I've name changed for this just in case.

My almost 3 year old daughter has a physical disability (spina bifida). She was also an IVF baby born after multiple attempts, 3 miscarriages (one in the second trimester due to an infection). In our case the disability doesn't seem to be genetic - amniocentesis revealed nothing - and they have no idea why she was affected. I do have a higher risk of having a second child with a disability but nobody really knows how much higher since they don't actually know what happened the first time round.
We're about to start trying for number 2 using the embryos we still have frozen.and we've actually decided against genetic testing of the existing embryos because the risk of a perfectly good embryo being damaged during defrosting, testing or refreezing. Since our daughter's disability isn't genetic the chances of them finding something are no higher than for anyone else with our background (age, etc.). The cause of my infertility was eventually determined to be adenomyosis so our daughter's disability isn't related to that either.

The reason we've decided to go for a second child because we both really want one. Even before our daughter was actually born we started talking about the possibility of having a sibling for her one day, under which circumstances we would decide against it, etc. I do think our daughter would be an amazing big sister but as an oldest child with a younger sister who doesn't really bother with me that would never be a reason to have a second child (although I do hope my children will end up closer than my siblings and I).
While my daughter does require more work than a child without a disability it's (currently) manageable and I'm not really worried about a second child fitting in around her appointments. At first the baby can just come along and by the time they're a toddler they'll either be in nursery or my daughter will be old enough to just be dropped off for her appointment while sibling and I wait outside. I'm more worried about how things will work during pregnancy since my daughter (currently) can't walk and I have to lift and carry her a lot. She's due to get a wheelchair soon though - actually it was supposed to already be here - and by the time we can actually start the IVF process she should be able to use it independently so that would definitely make things easier.
Cognitively our daughter is absolutely fine. She's actually ahead of her age for speech/language! Fine motor skills are where they should be. Right now her only issues are 1) she can't walk - but can crawl and get around independently in other ways, and is working hard on standing. Her doctors and physiotherapist are relatively certain that walking will happen for her one day - and 2) she's still in nappies and may not ever be "toilet trained" in the traditional sense since we're currently unsure whether she can even control her bowels. I don't think either of those things would be detrimental to a sibling. However, all of this is assuming we end up with a healthy second child. Honestly, if I was told the chances of having a (potentially even more significantly) disabled child next time round were as high as 50 percent my decision would probably have been different. At the very least we would definitely be genetically testing the embryos despite the risks!

About DD being a big sister and having family when you're gone, could you do something to nurture sibling-like relationships for her? If she has cousins, make an effort to help them spend time together, or do the same with your friends' DC or other only child families you're close to.

I don't think you should feel guilty about your DD being lonely/lacking family as an only child, but it's a good reason to put extra effort into ensuring she has more potential lifelong ties as an alternative to siblings. My parents were very introverted and I feel I missed out in a way as we didn't spend much time at all with my cousins or other families, and they didn't socialise much so I didn't grow up alongside family friends.

What’s your concern with generic testing?

I think knowing what you know and taking the chance would be cruel and selfish.

I am not sure why you wouldn't consider pre implantation testing. There is nothing wrong in my view in selecting an egg that means a child without health issues that will make their life more difficult even if it is not a life threatening or shortening condition. I know people who had a child with CF. They are very focused on giving their child the best life and treatment possible (and he is doing very well on a very new drug treatment) and he is deeply loved. They chose to have pre implantation testing given that they were both carriers of the CF gene. Their second child was born without CF and I don't see anything wrong with that. It doesn't mean their first child is less loved or less valued.

If you wouldn't consider pre-implantation testing I wouldn't go ahead. There is too much risk at 50% of a child with high needs which will mean you have to spread scarce resources over two children. Even with testing, you have to consider what it might do to your body to have a second pregnancy when you had such a difficult time of it when you were younger. I can tell you that I was a lot more tired with my second late thirties pregnancy/

My two children are neuro diverse. I love and am proud of both of them. I didn't know about the first before the second was born. It was really hard raising both of them and making sure that they both got the best chance of a successful life. In fact, the eldest is close to qualifying as a doctor. If I'd been offered the choice of having screening to have a neurotypical child, I'd have taken it. (You can't in fact screen for what they have.) I'd have had different children who would have had an easier life and I'm sure I'd have loved them just as much.

For what it's worth I was an only child with older parents. I did worry about having no family when my parents died. I married into a big family and that was a really positive thing about my husband when I met him. But you know what, three of my husband's four siblings live overseas in different countries these days and his one "local" sibling lives 500 miles away. All my children's cousins are all either much younger and or much older as well.

Of course it's selfish. Purposefully having a child with a life-limiting disability is all about you. No thought to the struggles of the child, who doesn't get to choose. I understand it's a hard situation and I would be upset in your position too but I wouldn't have another child.

@Missingpotatocroquettes it sounds like you’re saying that disabled people shouldn’t have children.

I think in your situation I would be happy with the child I had and give her the best possible life.

You're not disabled though. You have no idea what it's like to live as a disabled person but you want to choose that for someone else? And at the expense of your existing daughter.

I understand it's an unpopular opinion but I do think it's unfair to purposefully have children with severe disabilities.

I wouldn't with 50:50 odds. I have 2 disabled DC (but we had them very close together and disability not obvious from birth). At times I would really like another child but even though we don't have specific genetic conditions the chance of another disabled DC is around 30% for us and it feels quite risky.

This really stood out to me We would not have the financial resources to do the same for a second child if they had the same or other disability.

I do understand your sadness though. Even if we recognise our privilege of being able to have our own biological children, sometimes I think Mumsnet doesn't quite get the sadness of having to limit family size against our wishes.

Assume the baby will be disabled. How do you feel about it? Some foster carers or adopters choose more than one disabled child.

I was the disabled child. It has been really difficult for many reasons, and I have guilt even as an adult that resources and time from my parents were in shorter supply for my sibling because of what I needed. And they really tried.

It's tough, but I agree with you.

I am disabled and I wouldn't have children if I could pass it on. Life is painful and hard for me and I do sometimes wish I had never been born. Sorry but I do think it is selfish too if the disability is life limiting.

I'm sorry I'd this is too personal, but could you please tell me how you know your odds of having a disabled child are 30% if you don't have specific conditions?

Sure, I read research on odds after already having x number of autistic children. So we did have a specific condition but not like a "you carry this gene" situation. We did genetic testing because they also have severe learning disabilities but they never found anything (which I found hard for some reason).

Thank you for answering

My late partner had a congenital disability and chose to have children even though it is genetic. There was 50/50 chance of passing it on. He felt that despite the challenges, his life was very much worth living. Your choice isn't everyone's.

@Lincoln24 did he pass it on?

Where did I say it was? I gave my experience of living with a disability and a non-disabled sibling in a home where resources were stretched. Something the OP said would be the case for her family with the addition of a second child.

It would be better written as:

I was 'a' disabled child, rather than 'the' disabled child. It's a subtle difference but 'a' expresses one view, 'the' expresses 'the' view of disabled. Just my take on it