My husband and I wrangle with this decision constantly, too, so you're not alone!
Ryan was our first-born (2 previous miscarriages) and we had NO idea that he had any sort of heart problems till after he was born. He didn't have HLHS, but had enough of the severe symptoms that that was how the docs tried to treat him.
After Ryan died, we did genetics counseling and testing to rule out the obvious (chromsome abnormalities, DiGeorge's syndrome) and that was when were were told unofficially that what happened to him was a tragic fluke and nothing more. Sure, there probably was *something* that contributed but we'll never know what it was - and hopefully we'll never see that effect ever again.
The only thing that was discovered through the testing was that I have MTHFR, single mutation. For some people, it puts them at higher risk for cardiovascular disease and creates blood clotting issues. For me, I don't really have that concern, but I do have to watch when I'm pregnant, since the blood could clot in the placenta and create problems w/ the fetus. To combat that, I'm on a daily 81mg baby aspirin. The other probable link w/ MTHFR and Ryan's condition is that MTHFR can affect how the body absorbs folic acid. Many medical studies suggest that adequate FA can stave off heart defects, much in the way that they do neural tube defects, so if my body wasn't receiving enough FA while pregnant w/ Ryan, he didn't get enough when his heart was forming, hence his defects.
After all the testing and worrying and what-not, we decided to move forward w/ trying for another child. During that time, I was taking a daily baby aspirin, as well as 4mg (up from the recommended 400mcg) of folic acid. It took us 2+ years to finally get pregnant again and then we were both basket cases until we had the fetal echo at 20w, where we found that our little girl's heart was perfectly formed and functional. An echo done the day after Megan was born confirmed that she's heart-healthy. During our fetal echo, the cardiologist mentioned that, from his experience, girls didn't seem to have HLHS as often as boys, so the fact that we were having a girl was thought to be in our favor. But, what if she hadn't been a girl?
In the back of my mind, I'll always wonder if I was put at risk as a child, since I lived just 30 mi. from Three Mile Island nuclear station when they experienced a near meltdown. Many of my childhood friends lost parents at relatively young ages (under 50 y.o.) to rare forms of cancer, which is what got me to wondering if that possible exposure screwed with my genes. Again, there's no way of knowing for sure, but it always sits in the back of my mind.
Our situation is a bit unique, since each of our children is at opposite ends of the health spectrum. Ryan couldn't have been dealt a worse hand (heart speaking) and Megan couldn't be any healthier. So, the thought of trying for another child really scares me because I don't know that I could handle losing another baby. But, it makes me sad, too, that Megan doesn't have a sibling here with her like we had planned. I have no solid advice, unfortunately, because I still haven't come to terms with how I feel about trying for a third. All I know is that if we do, we'll follow the same protocol as we did with her, since we had such a good outcome and say *lots* of prayers.
Good luck! =)
