Amanda - posted on 03/18/2009
Well, your son is obviously doing quite well, since he was diagnosed @ 2 months and is now 5!
My son was born with VSDS, Pulmonary Stenosis, & Transposition of the Arteries. He was diagnosed pretty much the day he was born & taken to Children's Hospital of Philadelphia that same day. (I had no idea he had this condition while I was pregnant, so it was quite a shock!)
He had surgery in Sept. 07' & has been doing wonderfully since then. He is now 19-months & you would never know that he has a CHD. We see the Cardiologist about every 6 months. He'll need to have future surgeries, because they used human tissue to repair the area, and this tissue calcifies over time.
It's great that we have this site for support!
Take care, Amanda :)
Dawn-Marie - posted on 03/01/2009
My 16 month old twin daughter has a bicuspid aortice valve with pulmonary thickening and leakage on the pulmonary side. I'd love to talk to other Moms also going thru our simular situations. My daughter was diagnosed before birth with PACs I was sent to a childrens heart Dr during pregnancy where he told me after the birth she would just stop having these. Little did he know he was wrong and now here we are. She was seen every other month until her first birthday. Now it is every 6 months. Hopefully we will progress to yearly!
Sadie - posted on 02/24/2009
I know it's tough to be surprized with that at 5 years. Bless your heart! We had TGA (transposition of the great arteries). Switch was done at 3 days of age. Next, at 3 1/2 years of age, he had pulmonary stenosis in one particular pulmonary artery area. They "patched" the area, with gortex, to relieve the stenosis. It worked well, but his "outsides" grew more quickly than his insides. Therefore, at 8 1/2 he had another heart surgery (on 2/16/09) to repair multiple stenosis in both pulmonary branch arteries, and valve replacement. He was a champ! Surgery was Monday, walking to the bathroom Tuesday night, home and eating by Thursday dinnertime. He goes back to school on Friday for 1/2 day. One thing that helped him so much was his attitude. We have always spoken to Levi about what would need to happen. We did hospital tours, had a person from the hospital come talk to his class about what would happen, did colored diagrams of the things Levi would have replacedrepaired, etc...the whole shabang. He felt like such a movie star by the time he went in, he aced everything! Prep for him was crutial for me. Had he not been so aware of what would happen, his fear would have made me afraid. I was not and it was a piece of cake! There is a website "thechildrensheartinstitute.org" that was given to us by our insurance carrier. We found it useful and educational. Thought you may, too. Sara
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