sorry to hear this, prayers sent...

 

That's scary. The only people I have ever known who had a hole in their heart needed surgery. Is that something that you may have to face? What else have they told you about what lies ahead, if you don't mind me asking? I'm a curious person and like to learn new things...sorry if I sound nosy.

Sending good thoughts to your family.

 

thanks everyone. the thoughts mean a lot and they do help.

so far the monitor thing is working out well. he kinda thinks it makes him different so he is actually showing "the stickers" on his chest off to everyone. dork. we'll see how he does through the night with it.

amanda, thanks for your inquisitiveness. i've been all over the place finding information on this condition. the defect is called atrial septal defect. yes, in most cases a surgical procedure is required to close the hole.

at this point, the hole doesn't appear to be causing him any symptoms that interfere with his daily activities. but at 4 years of age, it isn't like he is vigorously exercising either. he's actually a pretty calm kid, not hyper at all. lol as he gets a little older in the next few years, he may get interested in sports or whatever and we don't know whether it would interefere with that yet.

especially since we caught this at such a young age, they may wait on the surgery and continue to do echocardiograms several times a year to monitor for any changes in the size of the hole.

if it shows signs of getting smaller they may further postpone surgery to see whether it may close on its own before it starts causing symptoms that would affect is daily activity levels.

if it doesn't shows signs of closing, depending on the size of the hole there are two procedures that may be considered. for small to medium holes, they use a catheter in the groin to reach the heart and attach a patch to the hole. for larger holes, open heart surgery is required.

1 out of 4 babies is born with this congenital defect. of the 25% born with it, most of the holes close up by the time the infant is a year old. around 6% to 8% don't close up.

if unrepaired, potential future issues range from getting tired easily when active to stunting of body growth to affects on brain activity because of lowered oxygen levels all the way up to having a stroke. the stroke can be caused because unfiltered blood passes through the hole instead of getting filtered and re-enters the body and a blot clot could form within the "dirty" blood and pass through to the eyes or the brain or where ever.

we'll see what the doc says after these other tests and follow up echocardiograms. i'm sure his hole is not serious enough to merit open heart surgery. what we need to find out now is just whether his hole is possibly closing up on its own or whether it needs a little help with a patch.

 

Interesting. Thanks for sharing. I'm sure it's a hard time for you right now, and I wish you all the best. You sound very strong, and he sounds like a cool kid.

 

ran this by my wife (she's a pediatric ICU Nurse, worked in the SICU @ All Childrens for years and is in the pediatric ICU up here in TN @ Vandy). She's said that a lot of those can and will close on their own (determined by the size of the hole, age of the child, etc). If it comes to surgery, the surgeon she reccomends is Quintecenta (no idea of the spelling), says he's the best around...
It's a scary thing I'm sure, however i'm sure he'll be fine.. it's amazing how resiliant our kids can be... regardless, he's in our prayers.

 

Prayers sent to you and your family.Keep us posted on his progress.

 

best of luck to you guys.

 

How did I miss this thread. Wendy and John. If you guys need ANYTHING please feel free to call. You guys are in our thoughts and prayers!

 

Sorry to hear about this Wendy. Hope you and John get some good news about it shortly.

Hope this doesn't get me killed but if he has his mom's hard headedness then its going to take more then a hole to slow that kid down. lol

 

PM Zate because his son was born with some serious heart issues and is doing well now from what I understand. Maybe he can suggest some Dr's..