Stephen, born 2001

The day our son was born, he had a problem; we just didn't know how serious it was. Stephen's pediatrician caught a murmur the day he was born but he thought it was something that would go away on its own. We returned a week later and it was still there so we were referred to a pediatric cardiologist to find out what the problem was. They did an echo and then immediately put Stephen in the PICU of the hospital. The next day, he was transported by airplane to Children's Mercy Hospital in Kansas City.

 

When Steven was 3 weeks old, he had his first heart surgery to repair a coarctation of the aorta (COA) and they also put a pulmonary band in to counteract the effects of a very large ventricular septal defect (VSD). Our PC said that he was going to wait until Stephen was bigger and older before they would try to do open heart surgery to remove the pulmonary band and patch the VSD.

 

When Stephen was 9 months old, he had open heart surgery. Everything seemed to be fine but he had trouble coming off the vent. The doctors found that the patch didn't stay in place on two corners so a week later, they went back in and replaced the pulmonary band.

 

Stephen was fine for 4 1/2 years, playing like any normal boy his age. He even played t-ball for three summers. But, he would get a little more tired than his friends. In the Spring of 2006, his PC said it was time to have the PA band removed and patch the holes again. He told us about the new procedure where they would patch it via catheterization instead of open heart surgery. The only problem was that we would have to travel 12 hours to Chicago IL to have this procedure done. Stephen was a candidate and on June 28, 2006, they closed his VSD through the cath procedure and removed the PA band. He came out with skin tone and color (which before he was always pale in skin tone). We were home seven days later.

 

Stephen started kindergarten in August of 2006 and he is continuing to do well. He is keeping up with all of his new friends at school without any problems. He can't wait until next summer to play t-ball again.

 

Story by Stephen's mom, Erin - KANSAS