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

I’m sorry things deteriorated for your son.

I think what you have said about things getting easier at this stage is why I’m now considering it as a possibility. We have a good routine, DD is happy, DH and I are happier after losing ourselves for a bit when she was younger and another child seems more manageable. We’re currently doing through the EHCP process but that is nothing compared to the challenge of the earlier years.

Life isn't fair though. We don't all get the same chances or all the things we want. I have only one child because I had an abusive relationship and had to raise mine entirely alone. That was hard and shit and not what I hoped for in life. You have different challenges but they are yours. Comparing your life to other women is so unhelpful. Enjoy the blessings you have and be happy.

Life is shit and unfair op.

My only (now adult) child is severely disabled. My health suffered so much from caring for him that a second child was never possible.

I would say appreciate what you have rather than hedging your bets on bringing another into the world with a high chance of being unable to cope. It would be awful if you spent your life regretting such a decision.

This is exactly it - if I could have another child like DD I wouldn’t be worried at all but that is in no way guaranteed.

This.

You've mentioned that your daughter's condition is well managed and won't need care later, but can you really be certain of this? As the neurotypical younger sibling of a severely autistic sister, being responsible for her care when my dad dies keeps me up at night. And my whole childhood was shaped by managing her difficulties and needs.

Only you know the condition and likely outcomes of it, but it won't be an easy life for your younger child, even if they get lucky with their genetics.

I haven’t seen a comment about how it could be unfair on the second child they they will be expected to support your first child. There could be a lot more resentment there especially if there are no physical needs. But at 39 chance of disability is pretty high tbh.

I was always told to expect a second child to be the opposite of the first. It’s true!

In your case, I would enjoy the lovely dd you have. Your reasons for having another child seem to be all about her. I’m an only child and I think it’s great. I’ve never wished for a sibling and actually my family is complicated enough that throwing an adult sibling in the mix would make my life now even more complicated. It seems like you have a good life for her now and I would enjoy it.

I’m so sorry, you’ve been through a lot. It must have been a relief (if that is even the word) to go on to have dc without the same condition.

1 in 4 is much better than 1 in 2. I understand the reasons for genetic testing, embryo selection or terminating due to a disability but I don’t think I could do that for a disability that is not life threatening and is life limiting.

I’ve been through a very similar and painful decision process. DS is disabled, his older brother was still born after early rupture of membranes, they were both conceived through IVF.
I had preeclampsia in the late stages of pregnancy and was close to having a stroke, DS was delivered vaginally but with forceps which caused major internal trauma and meant a long recovery.
Despite ALL of this and all of the risks I still wanted another child, DH just couldn’t understand and in the end made an emotional plea that he just couldn’t do it - he couldn’t watch another child die or potentially watch me die. That was what I needed to hear to be able to agree with him. He had a vasectomy last week.
I think I’ve made my peace with it now and DS is a joy, and hard work!
I think your DH needs to contribute to this decision, it seems unfair of him to leave it to you, he must have fears or concerns of his own?

Is there a reason why you haven't found out which of you is carrying the gene? In your case, I would be inclined to find that out and then if I wanted another child go ahead with either a sperm or an egg donor.

I wish i was an only! desperately wanted a sibling as a kid, unfortunately they were a HUGE disappointment, we fought all the time and as adults we barely speak. Dreading having to sort out my parents estate when the time comes.

Enjoy the dd you have, as an only she gets all your time and attention and IMO that is priceless! Much better than a crappy sibling.

I agree with this. If your second child has a severe disability then you're in for a seriously hard ride, being the parent of 2 children with disabilities, and possibly one being severe, can destroy lives.

Also, siblings often don't get on. If you have a second child, have it because you enjoy it and are looking forward to playing with a second baby / child all over again.

I don’t think disabled people are terrible burdens whose lives are not worth living and that’s the exact reason I wouldn’t consider embryo screening.

I would absolutely cope with another disabled child because I would have no choice but to cope, but life would be so much harder for all of us that I think I would probably regret it.

When you are really struggling to make a decision, make it based on the assumption that the worst case scenario WILL happen.

In your case you have a pretty high chance of a not so rosy outcome.

Picture the worst case scenario OP. If it makes you feel real dread don't risk it.

Honestly,, no.

It took us a while after DSs traumatic birth to try again and that was without any other issues with the delivery, pregnancy etc. Thankfully his condition is a random genetic mutation so there was no risk in future pregnancies.

If there had been a 50% chance of it happening again and a 33% chance of it being worse (thinking if she's mid range then one third around her level of severity, one third above etc). AND knowing that we couldn't have done all we did for a future baby as we had for our eldest, I couldn't do it.

You can't rationalize intentionally giving one child a better chance of dealing with their disability than the other imo.

Enjoy your gorgeous girl and throw everything into her. Build up networks and an pseudo family around her.

I’m actually not sure why DH doesn’t want to find out but I don’t want to find out because while we’re not showing any symptoms now we will likely have some symptoms at some point. If I knew it was me I think I would find it hard to have this hanging over me now.

WTF???

It is really tough. I was in a similarish situation to you after having our first DC. I couldn't have gone through with a termination for the condition in question, but I felt just about ok with screening via IVF. In the end we had a second DC via egg donor - I always knew it was me who carried the gene mutation. We are thrilled with our second child and are so glad we've had them. The main downside for us was that going via the IVF route took a long time. For me, it's been important to take ownership of my / our choices, and I'd encourage you to do the same, hard as it is.

Additionally, is there certainty that the mutation comes from you or DH, or could it be de novo in your DC? I don't know how it's possible to know the answer to this without you and your DH both being tested for the mutation, but I'm not an expert.

In your situation OP I wouldn’t, for all the reasons others have said plus the fact you’ve now said whoever has this gene will have symptoms “at some point”. That could be anytime I presume, so what if you had another child who had more severe disabilities and then either you/your partner begins to decline?

Is your daughter happy, loved? If that's your measure of a perfect family then go for it - disability is not the be all and end all.

I don't think you'd be giving into fear if you chose to not have another. I think you'd be making a very wise choice and one that would probably be best for your daughter, you and your husband.

What if you ended up with twins?

Why would you have another child when there is a strong possibility you will again be passing on a disability. That would be incredibly selfish.