Monday, July 17, 2006

Heath family heart story submitted by heart mom Danielle Heath.

Tyler Jacob Ballance was born by emergency C-section on December 7th, 2005 at Miami Valley Hospital; he weighed 7 pounds 4 ounces and was 19 ¼ inches long. Throughout the pregnancy his heartbeat was normal and all the ultrasounds showed no sign that anything was wrong. A late term ultrasound was ordered because the obstetrician thought he was small for the gestational age. On December 6th the ultrasound showed an enlarged left ventricle and a cardiologist was called in to review the ultrasound. Dr. Dillon noticed that something was wrong with Tyler’s heart and decided that he needed to be delivered very soon, two weeks before his due date. Tyler was delivered at 2:11 p.m. and was taken immediately to the NICU. It was about an hour before we were able to see him. We were with him for about 20 minutes before he was transported to Cincinnati Children’s Medical Center in an incubator by ambulance. The nursing staff was nice enough to make sure we had pictures of Tyler before he left us. It was two days before we could join him in Cincinnati.

Tyler was diagnosed with critical aortic stenosis, left ventricular dysfunction and moderate mitral valve incompetence. Upon arrival at the hospital he underwent a balloon dilation valvuloplasty to widen his aortic valve. This surgery was only a temporary solution to get his aorta opened so the blood would not flow back into his left ventricle. It worked for the most part but a lot of blood was still not being pumped out of his heart. He was not given a very high chance of survival so the doctors felt it was necessary to speak with us concerning a heart transplant and whether we thought of donating his organs. How is a parent supposed to react to such a question after only being with their child for a couple of days? We had not even been able to hold him and they wanted to talk with us about letting him go! Day after day we prayed and waited to see how Tyler’s body was going to handle his condition. Day after day we hoped for the best but prepared ourselves for the worst.

After a couple of weeks Tyler became more stable, started gaining weight and adjusting well to his medication. It was about this time the doctors once again came to us with our options. The doctors felt it best to wait and let Tyler get bigger, stronger, and older before attempting open-heart surgery. Besides spending the first 2 months of Tyler’s life in the hospital, the hardest part was preparing for the day when a complete stranger was going to hold our son’s heart and his life in their hands. The surgeons met every Friday so every Friday afternoon we waited for the news. The weeks went by and still no word on a date. During these weeks we were told by one doctor that surgery was inevitable and going to happen soon, then another doctor would come in and say that Tyler would not need surgery for some time. Finally, a date was set for Monday January 30th, 2006. I don’t think it really hit us until the week before the surgery what was happening. I have no doubt in our doctor’s ability to perform this surgery, but I do have doubt in their ability to deal with the family. I say this because on Friday afternoon, just two and a half days before surgery, we were told that the doctors wanted to wait even longer. Do the doctors realize what a family goes through in preparation for such a thing? We know that it probably sounds selfish, but we had mixed emotions about the news. We were happy that we were given more time to spend with our son, but with the stress of being there for so long and having to prepare each time they brought up surgery was enough to make us crazy!

After all the waiting, our prayers were finally answered. It was exactly two months and one day after he was born that we took him home. Tyler shocked the hospital staff by meeting all the goals they set and was discharged on February 8, 2006. We were able to do so without having his open-heart surgery. Our son is a fighter as are so many other children born with heart defects, but not all of them were as lucky as we were with Tyler. During our extended stay at the hospital we met many families who were dealing with heart defects that were much more severe than Tyler’s. We saw two families be destroyed by losing a child to such a horrible disease. It was hard enough to watch our son fight day to day, struggling to breathe, struggling to survive. It totally broke our hearts to meet these families and to see their outcomes.

Tyler is now almost four months old and is a completely different baby than what he was at the hospital. He got sick for the first time about two weeks ago with a cold and bronchitis. His cardiologist was amazed again that his body fought the infection and has to this day been able to gain the weight he so desperately needs. We are still waiting to hear about his surgery, but that decision will be left to Tyler. When he no longer gains weight and has more setbacks a surgery date will be determined. Until then we fight alongside him and many other families to make people aware of these defects and the affects they have on a child and their families.

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