Congenital Heart Defects

E.,
My son Bowen has critical pulmonary stenosis. He also has right ventricular hypertrophy, and regurgitation. He had a heart cath at 2 days old, and spent 2 months in the hospital. He is doing very well now except for a few times a week when his stats drop, and he turns blue. He has oxygen, and a heart monitor for home use. He has not needed Open heart yet, and we are hoping that he never will, but there is a possibility that he will need it in the future. I would love to hear from you, and your experiences with this Congenital Heart Defect. Email me anytime at ____@____.com...also if you have a myspace page check me out at www.myspace.com/julescooper. I have alot of CHD moms on my site, and we do alot to help raise CHD awareness.
Good luck
J.

My daughter doesn't have this defect, but you may want to check the March of Dimes website (www.marchofdimes.com) - there is a section that you can post questions/answers. You may be able to connect with others.

Best of luck.

My son was diagnosed with pulmonary stenosis right after birth. I'm not sure if this is the same as your child or not. He had an ultrasound at 3 weeks because of an irregular heart beat and the cardiologist found this. It was not severe enough to warrant surgery, he would just have to take pennicillen before dental appointments. He went back to the cardio. at 1yr and 2yr for ekg's and they said to bring him back when he could be still enough for another ultrasound. We took him back just before his 4th birthday and found out that he infact had a healthy heart. He was a preemie, so they think that caused the misdiagnosis. It was scary to think that he had a heart condition, but the doctor assured us that it was completely treatable which made me feel better.

Hi E.! My daughter doesn't have that defect... she has Shone's Complex. She had open heart surgery when she was 4 days old and spent 2 months in the hospital. She will need more surgeries in the future but right now, she is doing fine. If you met her you would never know she had a heart defect or surgery unless you saw her scar. (Shone's Complex is a CHD where the left side of your heart is too small. Her surgery was to reconstruct her aortic arch. Her aortic valve is completely a mess, for lack of better description. Her next surgery will most likely be to fix that. Her mitral valve is also deformed. She has 2 holes in her heart.)

Not that exact defect,but a son with TGA transpotion of the greater arteries. He goes to Nationwide Childrens Hospital in Columbus. He is now 10 and has just had his 2nd pacemaker put in. If have any questions I could try and help. I know it is very scary.