It is not unusual for a baby born with Down Syndrome to have a heart problem. Micah had a large hole which was repaired with open heart surgery at 10 months. Amelia had a small hole which closed on its own. Sunny had no problems at all.
Dante has a small hole in the upper chambers of his heart (ASD), and it has not closed by now and likely will not. Jamie and I took him to a cardiologist appointment last Thursday where an echocardiogram was done, and then we discussed our options. Dante was extemely uncooperative during the echo, but one glimpse did show the hole is still present.
We were told it will not bother him any time soon, but in 10+ years it could cause serious problems. There is a 20% chance of heart failure or lung problems in his adulthood. If we choose to repair the hole, it needs to be done before he turns 8 for maximum success, and there is a 1-3% risk of serious problems. It would be a minimally invasive procedure, not surgery.
This seems like a pretty clear case to us...1-3% risk now or 20% risk later. However, our first decision was to have a sedated echocardiogram done to be sure about the size of the hole. After that we will likely schedule the procedure. He is 5 now, and I would rather just get it done than wait a few years.
One good bit of information did come out of his appointment. When he was screaming and writhing about on Thursday while Jamie and I held him, an intern tried to entertain him, and the expert attempted the echocardiogram-- one of the receptionists heard him and brought in her iPhone for him to play with a musical pop up shapes and colors app. It immediately distracted him and allowed the one glimpse we had of his heart. I have been telling Jamie I think we should try to get Dante an iPad, and for me this confirmed that he would benefit from one. Jamie did not disagree, but they are expensive. There are so many different "apps" that are benefiting children with autism, and I think the larger iPad would be easier for him than the iPhone. It was so nice of the woman to leave it with him for the duration of the testing.
Now we are waiting for a call to schedule the sedated echocardiogram, and we will proceed from there.