Your story is very, very similar to mine....(death and m/c mentioned)
(no login) Posted Aug 20, 2011 8:24 PM
I have lurked on this board for 5 years now, occasionally posting, and this is the first time I've ever read of someone besides myself doing DE for genetic reasons.
I'll tell you a bit of my story. I'm 37 and have no issues with infertility (as far as I know). I am very healthy, but this is not the case with my siblings. I had a brother who was born with many severe problems (I won't go into the details) and passed away at age 3. I have another brother who has some similar issues but on a much lesser scale, and he lives with my parents at age 32. When my husband and I decided to start a family many years ago, we hesitated because of my family history. To make a long story short, over the course of two years, we had my brother tested for various genetic issues and consulted with several geneticists, but the bottom line is this: there is no known diagnosis for either of my brothers. It's even possible that they have completely different problems. The best we could come up with is that this is a genetic disease that could be carried by females but that affects only males. So we tortured ourselves with percentages and odds and various scenarios. It's possible that I'm a carrier and that my sons could be affected. Or it's possible that I'm not even a carrier. Or it's possible that we could have done an IVF cycle with PGD and had only daughters...but then one day, when it would be time for them to start a family, they'd be faced with the same tough questions we were encountering.
We wavered daily for nearly a year. One day we'd think, Sure, let's hope for the best and have a family naturally. The next day we'd think, How could we possibly assume the risk of having a child who is so ill that he would suffer horribly and not survive, as was the case with my brother.
In the end, we decided that we just couldn't deal with the uncertainty and the risk involved. So we moved on to DE. I became pregnant and miscarried the first cycle. Now I have two DS's from our subsequent cycles, and I can tell you that, even though it was a grueling and stressful process (to say the least), I haven't looked back once. I know that we made the right decision FOR US.
So I can't presume to advise you at all, because everyone has a different threshold when it comes to dealing with risk and uncertainty, and your family's genetic concerns are different from ours. But I wanted to share our story and to let you know that you aren't alone.