Hello and welcome to our home page. I'm Russ Gillespie , Joshua's dad. We live just outside of Charlotte, NC, in Davidson, and this is our story... Please sign our guestbook below before you leave. There are pictures and links to our favorite sites, also.
Joshua was diagnosed the day before he was born with hypoplastic left heart syndrome (HLHS), or basically, no left ventricle to pump blood to the body. Our options were a transplant, 3 stage repair, or do nothing and let Joshua die.
We chose the 3 stage repair and our cardiologist recommended we go to the University of Michigan Medical Center in Ann Arbor. Dr Ed Bove is performing more of these surgeries than anyone else in the world. Joshua and I flew on the university's Survival Flight jet to the medical center the day after he was born, leaving mom in the hospital and two other sons at home with Grandmother. It was the most terrifying and traumatic time in my life. Joshua was healthy (9 lbs 6 oz.) except for his heart. But without surgery, he would die in a week.
He had his first surgery at six days old, the Norwood procedure. His aorta was enlarged with a donor pulmonary artery, and reconnected to the heart through the pulmonary artery outlet. The pulmonary artery, which delivers blood to the lungs, is provided blood through a shunt. We went home 10 days after surgery!
The second surgery, the hemi-Fontan procedure, was done on January 17, 1996, when Joshua was 4 months old. With this, they disconnect the superior vena cava from the heart and tie it directly to the lungs through the pulmonary artery, and remove the shunt. We came home 4 days after surgery!
The third surgery, completion of the Fontan, was performed January 8, 1997, at 16 months old. A "tunnel" was constructed through the right atrium of his heart to allow the blood from the inferior vena cava to flow directly through to the pulmonary artery then to the lungs. Now, the heart is pumping blood to the body, while the lungs are supplied through arterial pressure. He now has a two chambered heart, instead of four. We came home 5 days after surgery! He is no longer on any heart medications, only a baby aspirin each day. All indications are he will be able to lead a normal life.
Joshua is now 12 years old, shows no restrictions or limitations, and does all the things a normal 12 year old does, including regular public school. When asked if he ever tires easily, we have to say we've tried to tire him out but never succeeded! We do our best to treat him no differently than our other two boys. He loves the computer and playing Mario on the Gamecube. As far as activity is concerned, wide open is the only speed that he knows! He rides his bike and scooter, runs and plays, non stop, never showing any signs of a lack of stamina. He is one of the youngest children in his class, but he is on or above grade level in all of his work. He is a real joy to have. There are many things we have to be thankful for, especially Dr Bove and the staff at U of M...they are remarkable and gifted people. Dr Craig Greene, our local cardiologist and Dr Stephen Mange, our pediatrician, are also remarkable in their support and abilities. Our friends and family have also provided tremendous support, taking care of our other children while we were away with Joshua, and even starting a fund to help us with the costs. Our church, Davidson United Methodist Church, and our Pastor have traveled this long and difficult journey with us, side by side, always there to give us strength. God has answered the many prayers that have been said for Joshua.
Please visit The Rare Heart Foundation, to learn more about the efforts to help others facing congenital heart defects.
The incident rate for HLHS is 3 in 10,000 births, with 2,500 infants born each year with HLHS. The cause is unknown and has not been linked to genetics. However, when one case is observed, normally, there are others on the way, leading me to believe that there must be a global effect linkage. Dr. Bove and his staff perform more that 150 surgeries each year on HLHS infants their success rate is now better than 86% for the first stage, 99% for the second stage and 99% for the third stage. Dr Bove continues to modify the surgeries, striving to achieve even higher survival rates. With a transplant, the availability of a donor is a key issue. More than 25% awaiting transplant die before a suitable donor is located. There is the constant concern of rejection. With the 3 stage repair, if a transplant is deemed to be the best option at anytime after the first surgery, it is still an option. However, it is most important that the first stage be performed within 30 days after birth, before the lung pressures have changed, in order for the chances at survival to be at their highest. We are fortunate to have a cardiologist who put his patient first and found the location and the doctor who do this surgery the very best in the world.
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Questions, comments or if I can help, please email me. Joshua's Dad, Russ Gillespie
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