ASD in 9 year old

Hi everyone! My 9 year old was diagnosed with a “small asd” when he was a newborn. We were told it would likely close, but we came back every year for an echo until he was 5. At that time, they said to come back in 4 years and if it hadn’t closed by then, we’d need to discuss doing something about it. It was also mentioned that it was fenestrated. I remember one of the docs mentioning that they thought that meant it was closing, or at least alluded to that possibility.

We went last week after the 4 year wait. I was assuming it’d be closed because they were always so dismissive about it before. Turns out it is the same. The doc said there is moderate shunting and he sees at least 2 holes, possibly 3. He did not mention any valve issues or anything else and said his heart is not enlarged, so they don’t want to do anything now. Once they see evidence of enlargement, they’ll want to perform the procedure. However, when it comes time, they will send us for a TEE and determine whether he is eligible to have the catheterization procedure. The doc was concerned that there was not enough tissue on the bottom side of the defect, but said the heart cath doc would make that determination. Then he told us to come back in 3 years.

I get that it’s not generally an emergent thing, but I’m feeling like it’s going to be impossible to wait 3 more years without more info. It’s really stressing me out. Should I go for a second opinion? Why wouldn’t they just get it out of the way now? It sounds like they are pretty certain it won’t close at this point. My son is not a very active boy. He has lots of energy, but he doesn’t want to do cardiovascular activity like other boys. Hates running. Isn’t interested in sports at all. Could this be related? Should we all be getting checked for this as well? It appears that it’s possibly hereditary.

My emotions are all over the place because I was expecting to go in to hear them tell us to never come back because his defect was closed. Instead I heard, he’ll likely need open heart surgery, but we want to wait for 3 years before we see him again.

.Hi,i am 33 year old man with a 27mm ASD. Friend, be sure that you approach an experienced doctor.Ask opinion of few other cardiac surgeons.
In my case i consulted 4 cardiac surgeons.After reading the experiences of our fellow forum members, i would prefer to undergo a minimally invasive cardiac surgery .Device closure is a simple procedure,but in longrun many are experiencing troubles .Since your son is very young , ask doctors about the possibility of doing a minimally invasive surgery.

I had a 27 mm ASD, and I am 6 years post device closure. I never had any complication so far. I am 48 now.

My daughter who is 14years has 1cm wide ASD and my son who is 9years old has two holes which are less than 4mm (PFOs). My daughter’s right heart is enlarged and we are planning to get catheterization done in summers.

For my son doctors have advised us to come after 3years. As per my understanding if the heart is not enlarged you can wait. How big is your son’s ASD?

I don’t know if this reply will help you. But, thought to inform you about our case.