Looking at him, you'd never know it, but my husband has tetralogy of fallot with pulmonary stenosis, which is a congenital heart defect. Here are the bits and pieces of Joe's story that I've been told by him and his parents.
My husband was born in May of 1983. Before his birth, they had no idea that there was something wrong with his heart. At three days old, he underwent his first open heart surgery which was to place a BT Shunt. If I remember correctly, my mother-in-law said that they were surprised that he was able to come home by Mother's Day.
As Joe grew a little bit older (age 2), the time for his complete repair had come. So in 1985, he had his second open heart surgery. You really wouldn't be able to tell it today, but he was pretty feisty. The way my mother in law tells it, he ripped off all of the tubes more than once! The funniest story I've been told is that during that hospital stay, he was served green beans with vinegar on them and he would not eat them. To this day, he will not eat green beans! Take it from me, I make excellent green bean casserole and my husband won't touch it.
Tetralogy of Fallot Repair – is repaired using a combination of a VSD closure and repair of the narrowings along the pulmonary artery path. An angled patch placed over the large VSD serves to channel left ventricular blood into the overriding, or straddling, aorta. Repair of pulmonary stenosis can involve sewing a patch in the right ventricular outflow tract, across the seat of the valve, pulmonary truck and pulmonary artery branches. When either the pulmonary valve or trunk is completely blocked (atretic), the conduit used in the Rastelli Procedure is required to complete the correction. (From CHD Babies
As the years went on, Joe lived a pretty normal childhood. He loved playing with his cars in the dirt like any typical boy. He was even able to play soccer. It wasn't until around the beginning of high school that he needed another procedure done where they did a heart cath where they did a balloon and also put in a stent. Since then, he has not really had any other complications. He suffers from migraines and scoliosis on an ongoing basis, but it does not prevent him from living a normal life. He works a more than full time job and has bit of a side business.
Just about two year ago, we found out that he will be facing open heart surgery to replace his pulmonary valve. Last year, in March of 2012, we hd his yearly check up. His cardiologist had ordered a cardiac MRI which told us exactly how everything is functioning. It's just a waiting game. *Update* Joe's 2013 appointment is at the end of February. He passed his cardiac MRI with flying colors last year, so this year we're only doing his normal tests (echo, EKG, physical). Praise God!