I apologize for the mass e-mail, but Iggy and I received some news yesterday that will profoundly affect our lives, and I wanted to communicate it to people as efficiently as possible.
A fetal echocardiogram has shown that our son, due in December, has a serious heart defect known as Hypoplastic Left Heart Syndrome. Basically, the left half of his heart is not developing properly, and he will need at least three surgeries to treat this, the first when he is less than 10 days old. The long term prognosis is not really known, because the surgeries to treat this condition were developed in the 1980s, so the oldest survivors are now in their 20s. If he survives to adulthood, which he has about a 75% chance of doing according to present statistics, he will almost certainly need to have a heart transplant at some point. However, there are people out there with this syndrome who've had relatively normal childhoods, attended college, and gotten married and had kids of their own.
Obviously, we are devastated by this news and still trying to take it in. We have decided not to terminate the pregnancy, and are hoping for the best. But it's going to be a rough road ahead.
If you are interested, here are some links I've found with more information about this condition:
http://hlhsinfo.homestead.com/
http://www.med.umich.edu/mott/chc/patient_con_hyp.html
http://tchin.org/portraits/by_diagnosis.htm (Look under HLHS...stories and pictures of kids with this disorder)
-Jen
The latest...
8 years ago
No comments:
Post a Comment