Deciding whether to have children

[Imeg]

Hi,
My husband has a genetic condition which means he has abnormal hands and feet, (but no other health problems). It hasn't really affected his life, he types faster than I do, but it is quite a visible abnormality because he only has 4 fingers and 2 toes.
The geneticist says there is a 50% chance of passing it on, although the severity can be unpredictable.
Testing in pregnancy is possible but would be later than I think I could cope with a termination (16-20wks).
I'm not really worried about the physical limitations but more about the effects on self-esteem.
I worry that I'm being selfish in wanting a child that may have a difficult life but on the other hand it is such a relatively minor problem that it seems drastic to decide not to have children because of it.
I don't think there is a right or wrong answer but I just wondered whether anyone else had been in a similar situation, and how you had dealt with it?
It's a tricky one to discuss with friends and family so it is really helpful to have a forum like this. :)

my dh has CMT, (basically among other things muscle wastage, mobility probs, pain, fatigue, it won't kill him, but he will end up using wheelchair, he is nearing chair use at 37yrs).

his condition is x linked, so girls would have (milder) and pass it on. Boys wouldnt have it or pass it.

I have to say it didn't stop us having kids, dh'd life is not easy, (and by extension neither is ours) but he is a really solid 'sound' guy, and a great husband and dad.

interestingly enough we had a boy; no cmt, but he does have learning disabilties and ASD...

life has no guarantees.

What does your dh feel about it? (I know we felt it could be an asset parenting a child with a specific disabiltity if a parent also lives with it...)

Have you considered IVF with genetic testing of the embryos before implantation? All being well you would get one or more without the condition to be transferred back to you and therefore free of the same condition.

Hi,
Thanks for your replies :)
Husband feels it's not too significant and wants to carry on, and clearly he's got the experience of growing up with it himself.
And yes, I agree, I imagine having him as a role model would be helpful.
I did ask the geneticist about the IVF option (PIGD), however in the UK the doctor has to get a license for each condition and because this is a rare condition and not many other people would benefit from developing the technology, it's doubtful whether it would be considered important enough (at least in the NHS), but secondly and perhaps more importantly it seems IVF carries its own risks. I think if we tried and found it didn't happen by itself this might be something to revisit (also by then we might have saved up enough if the NHS wouldn't provide it!).

Thank you for mentioning it, though, I don't think the geneticist would have told us about it if I hadn't specifically asked.

I am writing this really hesitantly, please do ignore it if I am off track... you mention your dh feels its not too significant an issue if your dc had the same as him, but for you it is something that is an issue in whether to have kids or not...

I am wondering whether it might be useful to find a place/person to discuss the feelings you have both about dh's disabilities and the possibilties of your dc having the same... It might be worthwhile to look at what it might mean to the child and to you as mum, what your fears and expectations are...

You may have all this straight in your head, please forgive me if you have. But I just get the feeling that space to talk about this honestly away from your dh might show you the way...??

dd2 was born missing her left hand. Not genetic, just one of those unknown things.

Yes, she has days where she says she would like to be the same as everyone else, but also days where she's happy. She told the prosthetic chap last week that it was great having a little arm because she'd got an extra day off school.

Someone from her charity has written a book about experiences of people with upper limb deficiences, which you might like. I think the easiest place to get it from is the charity (amazon had run out last time I looked) which is web site www.reach.org.uk/ReachCMS/view/Client/catalogue.asp?id=79 and scroll down to the book "Shared experiences".

We know people who are missing both hands and I don't think any of them would tell you not to have children, if that's any help.

Hi,
DeWe: thanks for taking time to share your thoughts, it's really helpful, I will look into the book.
Signandsmile: that's a sensible point, I do feel like everything is going round and round my head without really getting very far. I think writing some kind of diary might be a good idea, I would probably find that easier than talking to someone.
Thanks :)

I have dyspraxia and DH has aspergers syndrome. We both have dyslexia and mild hypermobility. I'm not sure what the chances are of our 3 ds's inheriting these things but ds1 (aged 4) has autistic tendancies and mild hypermobility, ds2 (aged nearly 3) has elhers danlos syndrome (extreme hypermobility) and ds3 appears unscathed at the moment (apart from reflux) but he is only 9 weeks old so too early to tell really. I also had a miscarriage at 12 weeks due to a chromasone problem.
We knew the risks were high when we chose to have children but even though it's hard at times (ok a lot of the time) I have never regretted having any of them and in fact the hardest times have been when we all have had a tummy bug one after the other and children without special needs get those.
Can you talk to your mil and ask her what it was like for her when your DH was young to get an idea of what it may be like?