Yeah, that’s probably a really crappy way to break the news, but I have never been a tactful person. We found out today that our baby has Hypoplastic Left Heart Variant, of which there are three types: 1.)mitral atresia, 2.)mitral atresia with VDS with severe aortic hypoplasia, or 3.)unbalanced atrioventricanal defect with aortic hypoplasia. The doctor couldn’t tell for sure which one it was today based on the pictures, but it is one of them. I don’t know a lot about it yet. I do know that basically the left side of the heart is not developing: on the ultra sound it is difficult to see the chambers and the doctor could not find the aorta. We also know that the process to fix this is three separate open heart surgeries before the baby is 4. The first procedure takes place days after birth and has the highest mortality rate– between 15-25%. The second operation happens between 4-6 mos, and the third one happens at 3 1/2 years. I don’t really know what the first two procedures are, I was in shock when the doctor explained. The third procedure is replacing the aorta which is why they have to wait so long: they want the heart to develop as much as it does so they only have to do the surgery once. Statistically, this disease happens to 1 in 10,000 people and science does not yet know why. There are no genetic or environmental or prenatal care factors that are identifiable.
Statistics and facts aside, it has been a very emotional day. My little boy (yeah, he is a boy) has a lot of work to do when he gets here, and Matt and I have a lot of work to do too. I am still so happy that I am having my baby, but I wish I could have the surgeries instead of him. I know that God doesn’t give us more than we can handle. The next four months are going to be filled with a lot of preparation and education. I really don’t know anything. Will my baby now be induced? Will I have a c-section? when exactly is the first surgery going to happen? Should I change anything about pre-natal care? The doctor did say there is nothing we could have done to cause or prevent this from happening, so probably not. What does recovery look like over the lifetime? Gina already wiki-ed most of this information, but I think I should research it myself too. And there are so many things that I am sure I have not even considered yet.
And, because I have an opinion on everything, I already have decided I hate the term “defect”. My baby is perfect, he is just coming to us differently than other babies. There is nothing “defective” about his little heart.