Christopher had a successful heterotopic, or piggyback, heart transplant on Oct. 8,1997. He was born May 7, 1990 and
was sick all his life with severe restrictive cardiomyopathy and secondary pulmonary hypertension. But, other than that,
Christopher seemed healthy and just kept getting happier and
happier with life. Our beautiful blond-haired, brown-eyed boy
lifted his head, rolled over, crawled, walked and talked
just like any other child. We decided to put off the transplant
as long as he was doing okay. He was definitely our miracle
child. He refused to give in to the heart disease. He was the
joy of our lives. But you would never have known he
was sick just looking at him or talking with him.
For a short time after the successful surgery, Christopher finally found out how much energy a normal 7-year-old can have.
By Christmas, he was running up and down the stairs with
his cousins and making plans for the future, the first time
he had done either in his entire short life. We thought now,
finally, he'd be able to lead a normal life.
When Christopher came home after recovering from the surgery, the hospital sent us home with the booklet they give to all heart transplant patients' parents. On page 19 of this booklet is a three-paragraph description of the horrible disease that killed our son: it is called post-transplant lymphoproliferative
disease, or PTLD. The booklet says it "occurs in only a small number of transplant recipients", and the booklet doesn't give a death rate. PTLD is triggered by Epstein-Barr Virus, a common virus in humans that causes mononucleosis. In some transplant patients, such as poor Christopher, the virus can cause tumors to grow in different organs of the body.
The donated heart, unfortunately, carried the virus. Christopher had never been exposed to it, so he didn't have any
pre-existing antibodies with which to fight the virus.
By January 19, he was back in Children's Hospital for
treatment of his PTLD.
To treat it, they stop the patient's anti-rejection drugs. But soon Christopher was breathing too fast -- his heart biopsy showed that he was rejecting the donor heart. He had to take steroids if he was to fight off both the rejection and the viral disease.
The doctors decided to do a lung biopsy to determine
if it was truly PTLD in his lungs, but something went wrong
with the procedure. On February 3rd, they lost
Christopher's pulse and his two hearts then stopped beating --
but he was resuscitated and seemed to be okay.
Christopher was given his first course of chemotherapy to
kill the large PTLD tumors growing in his chest, and he
seemed to be getting better. Then one night, in a panic,
he told my husband he couldn't breathe.
The next night, I had to listen to Christopher pleading not to be
put back on the ventilator. But I could tell he was struggling
for air and had to persuade him that he needed help with his breathing. I thought I was saving him.
So then Christopher said, "Okay, Mommy." Those were the
last clear words that we ever heard him say. Because the
breathing tube made talking impossible, and he had to be
heavily sedated so he wouldn't fight the tube.
On March 10th, Christopher's two hearts stopped again; he
fought back again but ended up on a heart/lung machine.
And then, they started more chemotherapy, along with a
fungal infection, kidney failure and dialysis. His last CT Scan
showed that his lungs were solid with virus-induced tumors.
Then, on March 24th, Christopher's hearts beat out their unique rhythm for the last time, falling silent at 12:03 a.m. To his
intense relief, my husband was by his side at that very
moment. He was afraid that Christopher's spirit would come
out of his body and look around and ask "Where's my Daddy?"
Before I had left the hospital that night, I had told Christopher
that I was very proud of him and that I loved him very much,
and I wanted him to come home and play with his Legos.
On March 27th, Christopher's funeral mass was celebrated at
St. Sebastian Church. His second-grade classmates and
student council members attended and the children's choir
sang. After the mass, we went outside to find about
200 students lined up along the driveway, forming a kind of
honor guard. It was absolutely beautiful and incredibly quiet.
What a loving tribute to our special little Christopher!