No house was harmed in the making of this post. Instead, we spent all day with our 3 year old, Michaela, as she underwent a battery of tests for Pre-Op at Stanford's Lucile Packard Children's Hospital. For those of you who are unaware, Michaela was born with a serious congenital heart defect, Hypoplastic Left Heart Syndrome. This is where the left ventricle doesn't develop in utero, and therefore the aorta never fully develops. This is the part of the heart that distributes the oxygen-rich blood to the body, and should be the largest and strongest part of the heart.
We found out several months prior to her birth, and were given 3 options:
- Heart Transplant
- 3-Part Surgery
- "Compassionate" Care.
The later option means you take your child home without medical intervention until they expire 2-10 days later. Until about 20 years ago, this was the only option. The former two options became available in the early 80's. Baby Fae was one of the first infant transplant recipients, although she lived only a few days. We, however, chose the 3-stage surgeries for our precious daughter, and pray every day that we made the right decision. It means that she will live with a 2-chamber heart, and that heart would have to work twice as hard for her.
Her first operation, call the Norwood procedure, was performed at 4-days old and the second stage, called the Glenn procedure, was done at 4-months. I could write reams of copy on all that has transpired through those days, but I shall refrain. Instead, I will share this: We have decided to move her surgical services from her previous hospital (UCSF) to Stanford for another mini-reams-worth of reasons.
She isn't yet ready for the 3rd stage, called the Fontan, where they complete and close the 2-chamber heart system, and so an additional heart surgery is needed. The issue is to open up the bottleneck in her aorta where the completely reconstructed arch meets the existing transcending aorta. The pinch you see at the top is caused by scar tissue that just wouldn't grow with her. Angioplasties are just not effective on this. Unaddressed, it would force undue pressure on the heart, valves and lungs.