What would you do?

[suzzze]

This is more of a 'what would you do' ..

We have always hoped to have two children. DS was born 3 years ago with a genetic disease which is progressive and life limiting. We have a one in four chance of passing this on to any other children we may have. DH said he would still want to go ahead with the plan of having another whereas I feel like we would be selfish to do this, knowing what we know

I would appreciate some input if possible.
I understand there are a lot of other things to consider when deciding to have a second child but would this one bit of info be enough to stop you?

Thanks

I'm sorry, that sounds very very difficult. I don't think I'd have another, no.

Is ivf to screen embryo an option?

Is the condition one that severely impairs quality of life by the age of 10 yrs old? Is the condition one that makes it hard for the person to have autonomy about what happens to them in adulthood?

I was never that desperate to have kids at all so I think it's easier for me to stay Stop at One than most people. But answer may depend on the quality of life & autonomy answers.

I think I would consider sperm donation/ donor egg or adoption. But if it happened naturally unplanned just go with it

I'd stop at one.

Im really sorry to hear this. What a difficult decision to make. I think you may be talking about cystic fibrosis? If so, if you were to have another child with cystic fibrosis then you'd need to consider issues around cross infection etc, so it can be a really difficult dynamic to manage. I'd be thinking of IVF with testing of embryos xx

Can you consider pre implantation genetic diagnosis?

It would depend on the nature of the condition.

Would genetic testing be a possibility?

If not, then I tend to agree with you rather than your DH.

Oh this is SO hard, OP. So, so hard and I’m sorry but I’d probably stop at one as well. But there are no guarantees in life for anyone so I might be swayed if my partner was hugely supportive and I’d be able to cope with the possibility of the worst case happening.

My son has a generic condition that's degenerative. It's neurological.

He was diagnosed at 14 but I knew in my heart his condition was more than originally thought and genetic and so made the decision to stop after him.

It was different for me though as I was a single parent and so made the decision not to pursue another relationship so I didn't have to make this decision.

We are now on a genetics study because I have same gene fault but I'm fine. So I'm glad I stopped.

But if I'd remained in a relationship and had another after a few years before this became clear I may not have had that choice or made a different one.

Do you have access to a genetics counsellor you can talk this through with?

Is your husband is maybe an optimist and thinks it won’t happen twice. The main thing to consider is that it could happen twice and would you all be able to be happy and able to cope with both children’s needs if that were the case? Can you give both children a good and happy life in those circumstances? If so, then I can see where your husband is coming from.

However, I think I would look into those options people have mentioned above first before leaving it to chance.

Not a chance in hell I'd have another. Not for the risk of my 2nd having the condition (though that would be a factor) but because of the physical, emotional and financial needs of my first impacting on how I could care for and emotionally provide for my second.

I wouldn't. 1 in 4 is a very high chance. Would you be able to live with the guilt if you were unlucky second time around?
Adoption, sperm/egg donation.. all viable options.. take them instead.

I’m very sorry you’re in this position. No, I wouldn’t. 25% chance is too high a risk

I would definitely look at getting IVF with pretesting of the embyros.

Thank you so much for the replies

Just to answer some of the questions -

The condition is very rare (not Cystic Fibrosis) and it is relatively slow progressing in most cases if the medication is adhered to. Life expectancy can exceed 40 but the quality of life declines significantly for most by 30. DS appears to be healthy to the untrained eye but already has a number of problems with his kidneys, bones and thyroid. This doesn't hold him back and he does everything a normal 3 year old does at the moment

We have had genetic testing carried out at diagnosis to confirm we both carry the faulty gene that causes this illness and were given the 1 in 4 odds for future children

I agree that my husband is probably thinking the odds are in our favour and so it's probably not going happen. I just feel that the guilt would haunt me either way. I would feel guilty if another child also had to face what DS does and that we would have to learn how to manage both conditions which would be huge as they can vary from sufferer to sufferer. I would also feel guilty if the second baby didn't have the condition as then DS would forever be the sick child out of the two and have a healthy sibling to compare himself to - it really breaks my heart thinking about it

Would they be able to determine if the baby has the condition early in pregnancy? If they could, I would try for a second.

@Catkin8

No, unfortunately the test needed to confirm can only be done once the baby is born

I would probably consider having another. You say most people with the condition have a good quality of life until about 30. In 30 years time medicine could have advanced to considerably lengthen this.

When I was a child people with cystic fibrosis generally didn’t live until past their teens, now life expectancy is mid forties.

Also 75% is good odds.

Presumably the baby would need to inherit the gene from both parents (as there is a 1 in 4 chance) to have the condition and a child who inherits from one parent would be a carrier but never develop the condition. Would your husband consider sperm donation? That would give your child a 50% chance of being a carrier but zero chance of developing the condition.

That's a really tough situation, OP. For me, I think 25% is right on the borderline of either decision! I think the overriding factor would be how much 'extra' time/resources you need to spend on your existing child. Without health issues, as they grow up they get less physically dependent on you, whereas if this was to increase I think I wouldn't risk it. If it was manageable, I think I'd go for it.

So you can have a test that confirms you are a carrier but they can't test an embryo or do an amnio? I don't understand that. (not that I know anything)

It's a difficult one. You have better knowledge about the condition and any possible progress that could be made.
It's hard to judge the risk without really understanding this.

Sperm donation is something that might be worth considering.