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

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.

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.

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.

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.

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

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.

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.

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

Personally no I’d stick to the child you have. Whilst you could have a child without any disabilities you could also have a child with a very severe disability that would affect all your lives. I’d focus on the child you have, especially as you’re coming up to 40.

Gently OP, I wouldn’t. And I think your posts say you know you shouldn’t either.

Sometimes head has to win over heart.

Save your resources - financial, emotional, time and energy - for your DD and also for your DH and your family unit as a whole. Prioritise your DD and invest time and resource in your marriage too. Another child, with no special needs or any special needs, still has needs that must be met and resourced and it doesn’t sound as if you have enough to go around to make things fair.

If you do choose head over heart, be kind to yourself and perhaps see if you can get some counselling. Not having another child when you would have liked to is something to be acknowledged and grieved for -not necessarily for a long time or to a great extent, but still it’s a wound that needs attention.

I can answer this having been in exactly the same position.

I was desperate for dd to have a sibling and to have a family unit. I felt the need for her to have someone other than her parents to love and accept her for who she was. I was also desperate to go through a ‘normal’ time as a parent.

We had genetic counselling and were told the risk was 1 in 4. Dd’s condition was undiagnosed so we couldn’t have pgp (would you consider this- embryos are tested pre implantation so not the same as termination).

In the end, our circumstances changed as dd died (unexpectedly) but we did go on to have more healthy dc without the same condition. I understand the emotional pull for you to do this, and its not as clear cut as some posters are making out.

As is natural, as your DD is a real, loved child, but her potential sibling is a hypothetical child, you are only really thinking about your DD.

You are worried that DD may resent having to become a carer for a potentially more disabled hypothetical sibling. But your DD already is disabled and requires additional care. It’s possible that the potential sibling if born without a disability would have to become a carer for your DD later on. They may resent that even more, feeling that they were born deliberately to have that role.

I wouldn't have another child in these circumstances.

I’m sorry but I think that’s just too great a risk. I don’t think being 39 means anything these days, though.

I wouldn’t if I was in your situation, purely because you can’t afford the same as what you have provided for your first child.

I would treasure what you have.

I have two autistic children. I didn't know ds1 was autistic when we decided to have a second child. They both have different needs, but ds2 has higher support needs and is not currently able to attend mainstream school. It has been incredibly challenging and it is difficult to meet both their needs when they have very different interests. The fight for support is ongoing and we get very little for a lot of work from our side. It does limit our ability to get them each the therapies the need, with both cost and time.

I would not remotely consider having a third child. The chances of another being autistic would be pretty much guaranteed and probably to an even greater support needs level die to our ages. I do worry about how vulnerable ds2 is and whether he will be able to live an independent life, but that shouldn't be on ds1 to have to care for him when we are gone.

But you seem to be assuming that having a sibling will automatically be a benefit to your DD. When in fact the evidence is very firmly against that.

You say you are doing it out of “fear of the worst outcome” but it’s actually the most likely outcome, statistically. It’s also by no means clear that having a sibling that enhances your life even if you don’t have a disability.

With great kindness, as you have obviously struggled with this and I have sympathy, it feels very much as if you have swallowed a myth about having siblings enhancing a child’s life without really thinking through how it works in reality.

I really wouldn’t have a second child in your shoes.

No way would I have another DC in your situation. Firstly, no one should ever have a DC to give the DC they have a sibling, and secondly, your 2nd DC has a 50/50 chance of disability - that's too high odds for me. A one in two chance? No way would I risk that. Plus, you've had to make a lot of accommodations for your DD who is at the mid point of the spectrum of disability for the condition she has. What if the new sibling is at the severe end? In that scenario, you will be lumbering your disabled DD with being the carer for an even more disabled sibling once you and your DH are gone and that is completely unacceptable as a known risk IMO.

I agree with this.

I also think neither you or DH really want another child, you are just thinking that you ought to and are trying to find a reason to justify it

Giving DD all your love, resources and time so she can have the best life possible is the most wonderful reason to stick at one.

As far as I understand, the disability has a wide spectrum and your DD has avoided the most severe side of it. As a genetic disorder, there is 50% chance you'll have another child with the same disorder, and this time, it could be in the severe range.

I wouldn't do it, OP. The odds are too high, and right now your family can focus 100% on your DD without struggling with another seriously disabled child.

It's not being negative. The odds are just too high.

Your child won’t be alone in the future - they will have friends, colleagues, partner? You two into midlife.

You are all making me cry! It’s hard to see all the thoughts I have about this mirrored in your replies.

Life just seems unfair. Other women get to have multiple easy breezy pregnancies with perfectly healthy children and my body was absolutely wrecked by the one and DD has her disability. I just want a normal life for DD surrounded by other family, not just me and DH. I want her to have other people who truly accept her for who she is and love her unconditionally. I know there’s no guarantee that a sibling would be that for her.

DD’s disability is well managed and she won’t need care when she’s older so that isn’t a concern. I would worry about her having to be a carer for a sibling with a more severe disability though.

As I’m already admitting my innermost thoughts here, I also think - what if DD needs a kidney and DH and I are not a match and I’ve left it too late to have another child for her? Don’t worry, I know you can’t have another child so your first child has a potential organ donor. But I have been in fierce lioness mode for DD since she was born that my warped brain sees that as a very valid reason.

I know I’ve not given a single good reason for having another child.

No - you absolutely should NOT have another child to benefit your first! You really don’t have a good reason to have a second, all your reasons are purely based on what you think will be great for your first…. The second child would just be there to make the first happy. Don’t do this. And no - I also didn’t have ‘breezy’ pregnancies, I lost my son’s twin, and for a while I felt I was ‘owed’ - then realised having another would just not work.

I think it hopefully goes without saying that a second child would wholeheartedly be loved as an individual but as @MeropeRiddle said, love isn’t enough. It’s just the reasons for having that second child that are based on DD.

You've asked on Mumsnet, where disabled people are generally terrible burdens whose lives are not worth living.

The only question is whether YOU want another child. Is that what you want? It's not actually clear in your post.

Lots of disabled children have siblings and, as with all sibling relationships, they gain some things and lose some things through having another child in the house. So don't base your decision on whether you're doing her a favour or not.

You managed your daughter's disability, so if you had another disabled child, you could cope.

Have you considered embryo screening, would you feel comfortable with that? You could be entitled on the NHS.