We're home, and it's not good.
The EKG showed that little monkey has Hypoplastic Left Heart Syndrome. Essentially, Hypoplastic Left Heart Syndrome (HLHS) is "a condition in which the left side of the heart is underdeveloped, is rare, but it is the most serious type of congenital heart disease. With this syndrome, blood reaches the aorta, which pumps blood to the entire body, only from the ductus, which then normally closes within a few days of birth. In hypoplastic left heart syndrome, the baby seems normal at birth, but as the ductus closes, blood cannot reach the aorta and circulation fails."
Essentially, a baby with undiagnosed HLHS that is not caught immediately after birth likely will not live past three or four days. Because we know about it early, it means planned heart surgery after birth, another heart surgery at 4-6 months and another at 3-4 years.
Staged palliation for HLHS is one of the great achievements of congenital heart surgery in the 90's. In what used to be a uniformly fatal disease, consider the following: Survival following a Norwood operation is around 80%, following a bidirectional Glenn operation around 100%, and following a Fontan operation around 95%. Overall, survival at 5 years of age is around 70 - 75%. Most patients who get through the three stages do quite well: Very few are on medications, almost all have normal growth and development, and very few have any exercise or other kinds of limitations.
This means I will need to give up our small midwife center in exchange for a large hospital in Boston. Clearly, we need to do what's best for the baby. The hospital is connected to the Children's Hospital. Our pediatric cardiologist was very supportive; he does work with CH and said he would tell a couple in Arizona with this to fly to CH for their care. Apparently, we're lucky to be so close to such an amazing hospital. (Interestingly enough, CH was featured in a Newsweek article for this exact syndrome, though the pediatric cardiologist didn't think we'd be candidates for this experimential procedure. He's taking our tapes down to CH this week to share with his colleagues.)
Another concern: I've got to go for an amnio this week. Should that turn up Down's Syndrome as well, the baby will not be equipped survive after birth, let alone survive the surgeries. We're still trying to deal with that possibility. If that's the case, we might have to terminate the pregnancy. Even if I carried him full-term, he wouldn't survive. We'll know later this week.
If it comes back fine, then the rest of the pregnancy should be okay. It's once he's born that we start facing the real problems.
Needless to say, we're devestated and are trying to cope with the information and emotional overload of the day. My parents are coming up tomorrow; Jay's mom will be here this weekend. If we seem distant (or needy), you know why.
I'm trying to remain hopeful, but I think we're both just so exhausted that we can't think straight. I appreciate all your good thoughts for today; I wish I had something different to share.