Cardiology 101

Today was the day I anticipated and dreaded all at the same time: our cardiology appointment. I don't know much about the heart, so I was hoping for a cardiologist who would explain everything to me clearly and plainly. Thank God, we were referred to such a man.

Here is what we knew before today:
Sasha had open-heart surgery sometime between birth and 8 months of age. But, he still had "unrepaired damage". We knew he had a heart murmur.

Ana had heart surgery in November, and we were told as of that point everything was fine.

Today:
Ana's heart looks fine. The cardiologist could not even say definitively what was repaired (a good sign). He has also reassured us that the bowing out of her chest is from her surgery, and it will likely correct itself over time.

Sasha will most likely require a second open-heart surgery. While this is not ideal, the good news is that his "unrepaired damage" is repairable. He has what is called an AV Canal Defect: a very common heart defect in children with DS. Basically there is large hole in the middle of his heart. It involves both upper and lower chambers. Red and blue blood mix in his heart. There are several reasons that this is dangerous...obviously. One of those reasons is that completely untreated, the blood rushes too quickly through the pulmonary artery into the lungs, causing too much pressure in the lungs. When Sasha had his first open heart surgery the doctors placed a band around his pulmonary artery in order to restrict the blood flow to his lungs, but they never repaired the actual wall. We will never know why they didn't do the repair, but I have my guesses. Sasha's cardiologist said that he had to really think through a timeline for everything, because it is not typical for this type of defect to be left unrepaired for so long. Commonly, AV canal defects are taken care of within the first 6 months of life, and cardiologists here in the US do not typically use a band on the pulmonary artery of children. Sasha's band seems to be holding up okay, and it appears to be in good condition, but truth be told, this is not a permanent fix. It's seems to sort of be the duct tape version of AV canal repairs from my understanding.

Next steps:
Sasha will have to be scheduled for a heart cath in the next few months. He has had X-ray, EKG, and ECO, but the doctor needs to get a better idea of pressure levels and placement of the band before they make a determination about surgery. Sasha will also have to have his thyroid tested prior to any surgery. Provided everything looks like he is healthy enough to undergo such a massive procedure, he will be placed on a special diet in order to help him with his protein stores, and he will then take on his second round of open-heart surgery in his 4 short years of life.

All of this is probably the reason that Sasha weighs in at a meager 21lbs. at nearly 4 years old. His little body has to work a lot harder than most people. He burns a large number of calories just going about his normal life. Although, he has gained 1 pound since being home :)

We are not surprised by any of this and either is God, but we would appreciate your prayers for Sasha.

God bless!!!