Julian was diagnosed with Down syndrome at birth. 50% of all children with Down syndrome have significant heart defects that require surgery. Julian is one of them.
The medical condition Julian has is called a transitional AVSD (Atrioventricular septal defect). This means that he has a hole between his atria and a hole between his ventricles.
The term “transitional” means that the valves at the center of his heart aren’t quite fully formed. When his heart was developing the valves didn’t quite close. This also needs to be repaired.
Many babies with Down syndrome have to have immediate surgery when they are only days old. Julian’s could wait until now because he had good blood oxygenation levels (95% when he was born and now 99-100%) and the holes in his heart aren’t greatly affecting his daily life (eating, breathing, exerting energy, etc.). However even though the holes aren’t very large, during our last check up Dr. David Fulton our cardiologist at Children’s Hospital told us one side of his heart is beginning to enlarge because it is working extra hard to move the blood. Julian’s surgeon will be Dr. Sitaram Emani.
So, those are the details. We are getting nervous about the surgery but have faith in the well trained doctors at Children’s. We have talked with other families who have gone through this to try to prepare ourselves but I don’t think anything can really prepare you.