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, roiled 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. This past 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 never did, so he didn't have any pre-exi sting 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.
He was given his first course of chemotherapy to kill the large PTLD tumors growing in his chest, and he seemed to be getting beffer. 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 1 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!
And here's my tribute that I'd like to include for my courageous little boy:
The life of one person cannot be measured in time
The impact of a life cut so short should be shared with all
So we can help those left behind heal their broken hearts
Time will be what is needed now -- to remember Christopher --
As a son, brother, grandson, nephew, cousin, student, friend
Christopher was a special someone to each and every one of us
His memory will be with us for always
Each one of us has been touched in someway by Christopher
His rosy cheeks that held the laughter of a happy child
His courage as a fighter
Or his hidden strength for someone so young
A life taken from us much too soon
When we remember Christopher these thoughts come to mind
We should be thankful for the time that
Christopher blessed our lives
And know he is at peace now....
And forever in our thoughts and in our hearts