Question for Parents with Childern That Have a Hole in Their Hearts

Ok, the one thing I know is that children with a hole are generally smaller not taller then their peers, it has something to do with the arteries NOT getting blood to where it needs to be for growth. I would look on the net for info. and keep a small spiral bound note book with you now at all times, just for little man's health notes. This way you can jot answers, questions, notes, tests, time line of care (you are his manager) ... Remember, Dr.s are busy so they are NOT going to go through his whole chart before your appointment so you having this info. at your finger tips - especially a time line and test info. will make the most of an apt. I learned this with my daughter and ask - do you have any literature you can give me - ask everyone who cares for your son. I started doing this when our daughter went to UNC, I was picking their brain period and I took the time to write everything down, a lot of health care people gave me their business card in case I had questions later.
My husband is an O.R. Nurse and although he may not know as much as a Dr. he always tells me "don't leave until all your questions are answered". Another thought, your insurance may offer an "ask a nurse program", use it, they can be helpful. I personally don't like united way, but they may help you.
Oh and I have a folder too for copies of tests, notes, and time lines ready to pull out and give to a dr. They appreciate you being prepared. Good luck, hope this helped. M.

My two year old has had this since birth. I am told that as they get more active, it can open more. It sounds like your son is doing great, though, because I was told the thing to look out for is failure to thrive, which means, of course, they are not growing good, or eating well, or developing where they should be. My daughter is also taller then average and talks extremely well for a two year old. I dont know who your doctors are, but her doctor is based out of Omaha, but travels up to Sioux Falls. Also, if she does need surgery, the surgein will come up from Omaha and perform it. Its a simple surgery they have now for it, which is perform like angoplasty surgery, the one that is perform thru a vein. WebMD.com has many wonderful information sites on it that has helped me alot with this subject. I dont know if the sleepless nights have anything to do with his heart defect, my daughter sleeps thru the nights very well, so sorry I cant help you there. My daughter has had no problems with her hole, plus is in need of no meds and if she goes to the dentist, which most told me they dont see kids until they are 3-4, which is fine with me, she doesnt need to take the antibotic. I am suppose to treat as I would any other normal child. My son also has a hole in his heart, but his is so tiny that they are just watching it every few years. Good Luck!

A., I have had a whole in my heart since birth and I'm 49 years old and live a very good life...I have had 4 children...Listen to your pediatrician and to the cardialogist...There is one thing that he will have to do for the rest of his life...That is to take antiobiotics when he has a dentist appointment and that is very important....They have come along way in treating wholes in the heart...Mine has closed alittle but it still there...All they have to do is listen to my heart and it is quite evident it is there.. I never lived in fear...I did everything everyone else did...My parents never babied me nor did they tell me I couldn't do this or that...I plan on living many more years...L.

Hi A.!
I am 25 year old that has had a hole in my heart my since birth. I participated in sports and have had a healthy life and it was only a concern when I had a ruptured appendix, but even then they just watched me carefully, and I was fine. The best thing to do is listen to your Doctor. If they think it is a problem and recomend surgury, then I would follow thier advice, but there are alot of people living healthy normal lives even with the hole, but if your son seams healthy, then you shouldn't worry. I think the only time that you realy need to worry is if he stops growing and participating in life, then you should take him in right away, but it doesn't sound like that is a problem. Anyway, Hope all is well!
J.