Heart defects are present in about 50% of babies with Down syndrome. Daniel’s particular problem is called Complete Atrioventricular Canal (CAVC) or Atrioventricular Septal Defect (AVSD). It is one of the most common (if not THE most common) heart defects for kids with Down syndrome. And of all the cases of babies born with this defect, about 50% have Down syndrome.
To put it in simplest terms, there is a large hole in the center of the heart, and one large inefficient valve instead of two smaller valves. This picture from Children’s Hospital of Philadelphia is a great diagram.
The problem with this heart defect is that the oxygenated and un-oxygenated blood mix around instead of staying in their respective areas. Too much blood goes back to the lungs before traveling to the rest of the body. That means the heart is working too hard, and the pressure in the lungs increases, leading to irreversible damage.
Daniel will need open heart surgery when he is 4-6 months old to repair his heart. The surgeon will sew something like Gortex into the heart to close the holes. He/she will also separate the big valve into two smaller valves. Fortunately, this surgery is pretty straight forward and very successful. It should be the only surgery he will need. Amazing, right?!!
We have been told to expect a hospital stay of about one week – give or take. I have seen lots of pictures of other kids who have gone through the same procedure. There are lots of tubes and wires, and it is amazing to see that within 24 hours, most of them can be removed.
I am so thankful that there are people skilled enough to be able to identify and repair the problems in a heart that is the size of a strawberry! We definitely live in a wonderful time!
**If you would like to learn more about CAVC/AVSD, go here: http://www.chop.edu/service/cardiac-center/heart-conditions/atrioventricular-canal-defects.html
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