[cmm07]

Hello everyone....
I had our first baby in sept 2014, and be was born with a very rare condition called Nemaline Myopathy... basically meant he hadnt any muscle strength at all and he couldnt breathe himself. We sadly had to let him go.
Since his death we are dedperate for our rainbow, but we are been prevented because of waiting for genetic results.
We were initially told 16 weeks to find out whether or not our sons condition was inherited or if it was a random occurance. We saw a genetic specialist and she informed us that it will take another 6 months from now. We are so frustrated as we had put our hopes on trying again now, but we have been advised to wait so that our future pregnancies can potentially have pre natal testing.
The genetic doc said because its such a rare condition its only 50/50 that they will actually be able to tell us if its inherited. So we may never know anyway and just have to try again and see what happens. They said worse case scenario, if it was inherited, then we'll have a 1 in 4 chance of it happening again. or we will have the same chance as anyone else.... very slim!
My partner says its sensible to wait because he couldnt risk loosing another baby, but I always live in the hope that our next baby will be okay. Maybe i am too optimistic.

Has anyone been in a similar situation or what would you do??

thank you xx

I havent had a situation where i dealt with potential genetic issues, but I have lost a child and I know that it is the hardest thing for any mother or father to go through. I am so sorry for your loss. I think that it is sensible to wait, unless you feel their are time constraints to due age or other factors. If that is the case, then you can take the risk and try again, but I would personally be scared of a repeat scenario.

Again I can't express enough condolences for your loss. Its a grievous tragedy that no one should ever have to go through. When you lose a spouse, you become a widow/widower. When you lose your parents you become an orphan. When you lose your child……there are no words for that. Stay strong.

[lizardlady]

cmm07, I'm so sorry for your loss.

I have not had to face the decision you are facing, but have close friends whose son was born with severe birth defects. They underwent genetic testing and discovered they were both carriers for the disorder. There was a 1 in 4 chance that any future children would also be born with the condition. They opted not to have any more children. She had her tubes tied and he had a vasectomy just to be sure they didn't get pregnant again. Am not telling you to do that, just sharing what my friends did.

If the news is not good for future children for you and your partner, what about adoption?