The mission of Lukeís 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.
was born in the morning of October 16, 2003. He didnít 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 Lukeís 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 Childrenís 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 Lukeís
heart to avoid doing a heart transplant. This was the preferred
surgery to transplantation. Lukeís problems only got worse.
The Norwood procedure required that one of his pulmonary valves had
to be functioning properly. Lukeís left valve was underdeveloped
and his right was leaking. One of the doctors came to Lukeís
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 childís 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 Godís 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 co-ordinate
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, Lukeís 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 couldnít 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 as available for Luke.
I was so exited I could hardly contain myself. I hug 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 couldnít 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 didnít 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
didnít 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. Lukeís 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 ďThe
MatrixĒ. 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.