We use CHP - Children's Hospital Pittsburgh, PA. for their cardiac care. They have a large group of cardiologists, but we try to keep to just a few. Our surgeon is Dr. Siewers. We are very pleased with this hospital.
This is Joshua's story. He was born via c-section due to my having previous sections. The pregnancy and delivery were uncomplicated and his Apgar scores were normal. He was found to have cyanotic spells when bathed and/or crying and a murmur from front to back. Multiple tests were performed, but at the time (1991) echos were not done at this hospital on infants. Josh was otherwise healthy and nursed well.
At his two-week checkup there was no change, so we were referred to CHP. Unfortunately, we couldn't get in for 2 weeks. His sats at 4 weeks were 70s at rest and 50-60 when stressed. An echo was done and no pulmonary artery was found. He was thought to have TOF. At 5 weeks this was confirmed with a heart catheterization and he was diagnosed with TOF-large VSD/overriding aorta/no pulmonary artery, severe pulmonary artery hypoplasia, pulmonary atresia, and main collateral vessel from the aorta to the pulmonary branches.
At 7 weeks he had open heart surgery to place a pulmonary artery homograft conduit that connected the right ventricle to the pulmonary artery branches (incomplete Rastelli). He did well and 24 hours later he was taken off the ventilator. Two hours later he went into respiratory arrest and was re-vented. Four hours later he arrested again. His little heart and lungs couldn't handle so much blood flow all at once. They told us they didn't expect him to make it. They did put him back on bypass and opened him up right there in the PICU (not done before) and banded the conduit. He swelled so much they could only close the skin and he stayed like that for three days. He was then taken to the operating room to close the sternum. He was taken to the OR again before leaving PICU to have lines changed and cultures done. By the end of the 3-1/2 week stay, he had another cath and went back to the OR to have the band removed. His WBC's had decreased but were still very high. No cause was ever found and he had no other signs of infection. His color was much better after the surgery.
Since then Josh has had several caths, and closed heart surgery at age 5 to tie off the main collateral vessel in an attempt to redirect the blood flow in the lungs. At age 6 he had balloon angioplasty for right pulmonary artery stenosis.
In September 1999, Josh was life-flighted to CHP due to having 2 brain abscesses. We were told that having an open VSD predisposes him to them due to the mixed blood. The next morning, while we were waiting for a special CT scan to be available, Josh developed severe cerebral edema and would have died without the immediate treatment that only could have been given in a medical center such as CHP. He had an emergency I/D and it was found that the 2 abscesses were connected. That was good. We also lucked out as there was only one bacteria, usually there are several. Also his echo of the heart showed no damage! We were in CHP from 9/21- 10/15. He ended up with another I/D and pancreatitis. My husband and I were very impressed with the neurosurgical team.
Josh just had an echo and cath on 4/20/01 and will be evaluated by the cardiology-cardiothoracic team for the possibility of having a full-surgical repair.
In the mean time, Josh attends 4th grade (grades aren't the greatest since his neuro problem), plays on the volleyball team (first time on any team) and most of the time is just like other 4th graders. He is very small, but that is partly hereditary (I'm 4' 9-/2"), has some tet spells with exertion (but he usually limits his activity to what he can handle), has some seasonal allergies that trigger asthmatic symptoms on occasion, and is otherwise healthy. He is a very pleasant, friendly and loving little blond haired boy, our miracle son!
