5 Yr Old Son Diagnosed with Atrial Septum Defect

Hi N.,
My son, who is now 9 1/2, was born with a hole in his heart - VSD (Ventricular Septal Defect). The hole never closed on his own, and by age 3 he had to have surgery to close it, because it was affecting his health. I have to say it was the best thing that every happened to him. He was a different child after that. He had multiple problems when he was born, and some things we are still working on, but it all worked out great. Surgery is very scary, and I was 7 months pregnant at the time, but it turned out to be his easiest surgery out of all he has had. He was home in three days, wrestling with his sister. I am not sure how more involved your son's surgery will be compared to Nathan's, but children bounce back alot quicker than adults. My son's surgeon was from Geisinger in Danville.
Good Luck, M.

So sorry you're going through this. I had an Atrial Septum Defect myself. In December 2001 I had it repaired, I was 22. I'm not going to lie, the recovery after open heart was difficult. I couldn't do much for myself for the first few days, but in about two weeks, I was pretty much back to normal. My scar is about twelve inches long, but it's faded now, for the most part.

I don't know anything at all about the device you've mentioned. My only thought would be that it would be better to have it repaired once and for all, rather than worrying about what's going to happen to the device. When mine was discovered (long story), I was told that these defects are usually repaired when the patient is a child, making the recovery easier on the patient. It is a fairly common surgery, even though it is a very serious one.

I don't know how much help that really was, but if I can answer any questions or offer any support, you can email me at derhoades at hotmail dot com. Good Luck! I'll pray for your son and your family as you go through this difficult time.

-D.

N.,

Hi! First off, I am so sorry that you just found this out. My daughter is now almost four, and she was born with ASD, as well as Pulmonary Atresia, which is another congenital heart defect. She had open heart surgery when she was three days old, but that was to repair the Pulmonary Atresia. We actually didn't find out about the ASD until much later. In Megan's case, they decided to wait it out to see if it would close on its own. Otherwise, they would have corrected it with a catheterization. Fortunately, it did close on its own.

Are they concerned because of the size? My advice is this. Having watch my daughter go through both open heart surgery, as well as two catheterizations, even though it's still heart wrenching, it's easier to deal with the cath. Unless they feel it's in your son's best interest to do it via open heart, I would go the other route.

If he does need the open heart surgery, my daughter's surgeon, Dr. Victor Morell, from Children's Hospital in Pittsburgh, is wonderful. I have before and would trust him again with my daughter's life. He's an exceptional surgeon, and a kind human being as well.

We will keep you in our thoughts and prayers. We hope everything works out for you.

N.,
I have been in your shoes. My eldest was diagnosed with ASD and VSD as a newborn. (Also, as with your son, it can go undetected for years....even into adulthood.) My questions to you are:
1. Who is your cardiologist?
2. Are you comfortable with your cardiologist?
Also, is your son currently symptomatic? Is he having shortness of breath, etc. or some other symptoms? How did they come to the diagnosis?
If there are no present symptoms, you may want to think about holding off on surgery. Because these things can close on their own.
My son was diagnosed with an Atrial Septal Defect and a Ventricular Septal Defect as a newborn. He was thriving and doing very well. We held off on the surgery. (Our cardologists recommended not to do anything so long as Adam was doing well.) Before he turned 3 years old the VSD closed on it's own. (Our prayers were answered! Prayer DOES work!) And now that he is 6 1/2 the ASD has been downgraded, as well. So we are hopeful to get thru this without surgery at all.
But I can totally relate to how scared you are. When my son was first diagnosed I couldn't talk to anyone about it without crying.
If you want to talk, feel free to e-mail me privately.
I wish you both all the best,
L.