John Bailey

It was around thirty weeks of pregnancy when we found out Bailey had a heart defect: TGA, DORV and VSD during a extra ultrasound I had done because of hypertension and gestational diabetes. I was referred to a specialist where he told me I would be induced in Atlanta so Bailey could be right there at Egleston. A couple of weeks before I went to Atlanta for a check up and to visit with the doctors that would be delivering me. I had extreme high blood pressure so they kept me overnight and in the morning they did a fetal echo while I was there and found out Bailey also had pulmonary stenosis. I was induced at a later date 9/28/04, the day our angel arrived, not knowing it would be a short time here.

Another cardiologist did the x-rays and found that Bailey also had mitral valve stenosis. Basically when we talked to the surgeon the game plan had definitely changed, it went from one surgery of switching the arteries to three separate surgeries for Hypoplastic Left Heart Syndrome. Bailey had his first surgery one week after his birth, B-T shunt, the first step to the Norwood Procedure. Bailey also had severe acid reflux so he stayed in the hospital longer than expected to be sure no weight was lost or the shunt did not close up from dehydration.

So two weeks later we finally got to take him home. For the first week we stayed at my parents house to be sure everything was o.k. Then we went home—by then Bailey was four weeks old. We had twice-a-week checkups from home health care nurses and a cardiologist visit every other week. Everyone said Bailey was the best heart baby they had ever seen and he ate like a horse with no tube feeding ever. Growing like a weed!

The day Bailey died was the worst day of my life. That morning I could not console him but there were no signs of anything I was supposed to look for. So I was still worried and called the nurse practitioner in Atlanta and said I was on my way. She told me to call the paramedics here and take him to the nearest hospital! I said no, because they told me not to take him to any hospital except for Egleston. That is when I knew we were in trouble.

We got to the hospital about 10:00 after the paramedics came to get Bailey. The ER staff said the Angel team was on their way from Egleston. Well they arrived at 1:30, but by that time Bailey's heart rate was dropping. Three times Bailey's heart rate had dropped before they could get him on the plane. We got to the airport and it dropped on the runway so we had to turn around and got back.

Bailey passed away at 6:04pm. The doctor's said, if he would have survived he would have been severely brain damaged and in a wheelchair for the rest of his life because his Ph levels were so high and blood gases were low. He was sent here for a reason but we are glad he came!