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About UsMission Statement
The mission of Luke's Big Heart Foundation is to provide financial support to transplant patients, by donating money to hospitals and research organizations. Our goal is to help expedite care to patients who are not in a financial position to pay for it themselves and to further the research for better ways of care to patients. Our hope is to one day be able to have transplant patients that require no medicine to keep the body from rejecting the transplanted organ. |
Our Story
Luke was born in the morning of October 16, 2003. He didn't pink up immediately after birth. The nurses took him to the nursery to check his vital signs. Luke had a low respiratory rate and oxygen level. So, they put Luke on oxygen for the rest of the day. The nurses reassured us that this was a normal problem in newborn children. That evening Luke's pediatrician (Dr. Roberts) came after office hours to see his new patient. When he checked him out he could hear a heart murmur. Again we were told that too was a normal thing in newborns. Dr. Roberts still felt that he should still contact the local pediatric cardiologist Dr. Jones to check Luke out the following day. Later that evening Dr. Jones was call into the hospital for another patient. He decided to take a look at Luke while he was there. He later told us that it was a good thing that he came that night instead of the next morning. Had Luke not been seen that night he probably would not have live through the night. Dr. Jones discovered that Luke had a rare heart disease called
Hypo-plastic left heart syndrome.
We were told that he would have to be transported to Children's Healthcare of Atlanta immediately. Luke was transported at 3:00am the next morning, after he was born. That day were filled with many tests to confirm what Dr. Jones had told us previously. We were told about one procedure were doctors would reconstruct Luke's heart to avoid doing a heart transplant. This was the preferred surgery to transplantation. Luke's problems only got worse. The Norwood procedure required that one of his pulmonary valves had to be functioning properly. Luke's left valve was underdeveloped and his right was leaking. One of the doctors came to Luke's room to speak to us about our options. He told us that we had two options. First, he could have a heart transplant and second we could do nothing. It was at this time that we realized the seriousness of our child's condition. I broke down into tears, faced with a decision that no parent should ever have to make. Which was to give him a chance to live or let him die. Jenny and I decided that it was not our decision to make. We put it in God's hands. We asked him that if Luke was supposed to live that there would be made a way. But, if he were to die that he would go peacefully.
Later, we were told that the doctors thought they could keep Luke alive for about 15 days. Unfortunately, the average wait for a heart was about 30 days. Over the weekend tests were done to make certain that Luke was eligible for a heart transplant. The following Tuesday, Alex, the transplant coordinator, informed us of a new procedure being done in Canada and that it had never been done at CHOA before. It was called ABO incompatible heart transplant. Wednesday, we learned that it could only be done in newborn children. Babies could have it done because they do not carry antibodies against other blood types. They told us that they would use the next available heart regardless of the blood type. We were told the success rate was the same as a normal same blood type transplant and that it would greatly increase his chance at getting a heart in time. Dr. Kanter, Luke's heart surgeon met with us to find out if we were going to go with the ABO incompatible option or not. I told him that I was leaning toward doing the ABO incompatible heart transplant. He told me that I couldn't lean one-way or the other. I needed to make a decision yes or no. We said yes. The next day Jenny stayed at the hospital and I when home to be with the children and get some over due yard work done. That evening I got a page form Alex. When I call she told me that a heart was available for Luke.
I was so exited I could hardly contain myself. I hung up the phone with Alex and called Jenny. When I called I asked her if she had heard the news. She said what news? I said they have a heart for Luke! Jenny told her mom who was standing next to her. The other nurses must have heard because I could hear a lot of exited people through the phone. Thanks to the selfless act of parents that had just lost a child many other children that night received a second chance at life. I couldn't help but think that at the same time I was celebrating there was a family grieving over the loss of their child. This selfless act will never be forgotten. Luke was now being prepared for surgery. When the time came, we walked along side Luke as the nurses wheeled him the surgery room. When we arrived at the surgery room doors they told us to say goodbye. We didn't know if that was the last time we would see him alive or not. We were hopeful.
We were given our own waiting room to stay in while Luke was in surgery. Every hour a nurse would let us know how things were going. Finally Dr. Kantar came into the room. He told us that surgery didn't go great but it went well. We would be able to see Luke very soon. When we went into the room for the first time it was a big shock. Luke's chest was still open. You could see his heart and lungs moving behind a plastic mesh covering the opening. He looked like one of the babies in the movie "The Matrix." There were more tubes and monitors coming out of him than there was baby. The next four weeks we received a crash course in nursing. We learned about his new heart. We learned how to pronounce all of the meds that he was taking at the time. Finally, two days before Thanksgiving and five weeks later. Luke came home. We were one big happy family.
During all this time we had fallen into quite a bit of debt. I had to sell my truck, our Christmas money was gone. The bills started to come in from Luke's meds. We didn't have the money to pay for the meds. That is when Georgia Transplant Foundation stepped in to help us out. They were able to pay for Luke's meds for the first month he was home. This gave us time to find a permanent solution to our financial problems. With all of the other things we had to do Georgia Transplant Foundation was a financial blessing in our lives, and this led us to start this foundation to help other parents in similar situations.
Hypo-plastic left heart syndrome.
We were told that he would have to be transported to Children's Healthcare of Atlanta immediately. Luke was transported at 3:00am the next morning, after he was born. That day were filled with many tests to confirm what Dr. Jones had told us previously. We were told about one procedure were doctors would reconstruct Luke's heart to avoid doing a heart transplant. This was the preferred surgery to transplantation. Luke's problems only got worse. The Norwood procedure required that one of his pulmonary valves had to be functioning properly. Luke's left valve was underdeveloped and his right was leaking. One of the doctors came to Luke's room to speak to us about our options. He told us that we had two options. First, he could have a heart transplant and second we could do nothing. It was at this time that we realized the seriousness of our child's condition. I broke down into tears, faced with a decision that no parent should ever have to make. Which was to give him a chance to live or let him die. Jenny and I decided that it was not our decision to make. We put it in God's hands. We asked him that if Luke was supposed to live that there would be made a way. But, if he were to die that he would go peacefully.
Later, we were told that the doctors thought they could keep Luke alive for about 15 days. Unfortunately, the average wait for a heart was about 30 days. Over the weekend tests were done to make certain that Luke was eligible for a heart transplant. The following Tuesday, Alex, the transplant coordinator, informed us of a new procedure being done in Canada and that it had never been done at CHOA before. It was called ABO incompatible heart transplant. Wednesday, we learned that it could only be done in newborn children. Babies could have it done because they do not carry antibodies against other blood types. They told us that they would use the next available heart regardless of the blood type. We were told the success rate was the same as a normal same blood type transplant and that it would greatly increase his chance at getting a heart in time. Dr. Kanter, Luke's heart surgeon met with us to find out if we were going to go with the ABO incompatible option or not. I told him that I was leaning toward doing the ABO incompatible heart transplant. He told me that I couldn't lean one-way or the other. I needed to make a decision yes or no. We said yes. The next day Jenny stayed at the hospital and I when home to be with the children and get some over due yard work done. That evening I got a page form Alex. When I call she told me that a heart was available for Luke.
I was so exited I could hardly contain myself. I hung up the phone with Alex and called Jenny. When I called I asked her if she had heard the news. She said what news? I said they have a heart for Luke! Jenny told her mom who was standing next to her. The other nurses must have heard because I could hear a lot of exited people through the phone. Thanks to the selfless act of parents that had just lost a child many other children that night received a second chance at life. I couldn't help but think that at the same time I was celebrating there was a family grieving over the loss of their child. This selfless act will never be forgotten. Luke was now being prepared for surgery. When the time came, we walked along side Luke as the nurses wheeled him the surgery room. When we arrived at the surgery room doors they told us to say goodbye. We didn't know if that was the last time we would see him alive or not. We were hopeful.
We were given our own waiting room to stay in while Luke was in surgery. Every hour a nurse would let us know how things were going. Finally Dr. Kantar came into the room. He told us that surgery didn't go great but it went well. We would be able to see Luke very soon. When we went into the room for the first time it was a big shock. Luke's chest was still open. You could see his heart and lungs moving behind a plastic mesh covering the opening. He looked like one of the babies in the movie "The Matrix." There were more tubes and monitors coming out of him than there was baby. The next four weeks we received a crash course in nursing. We learned about his new heart. We learned how to pronounce all of the meds that he was taking at the time. Finally, two days before Thanksgiving and five weeks later. Luke came home. We were one big happy family.
During all this time we had fallen into quite a bit of debt. I had to sell my truck, our Christmas money was gone. The bills started to come in from Luke's meds. We didn't have the money to pay for the meds. That is when Georgia Transplant Foundation stepped in to help us out. They were able to pay for Luke's meds for the first month he was home. This gave us time to find a permanent solution to our financial problems. With all of the other things we had to do Georgia Transplant Foundation was a financial blessing in our lives, and this led us to start this foundation to help other parents in similar situations.