†Ethan's House†
Our Angel.....
Christopher
May 07, 1990 to March 24, 1998
Christopher was only 7 years old when he died, five months after having a very rare surgery: a heterotopic, or piggyback, heart transplant. The operation left him with two hearts, Christopher’s own and one from a donor, each beating out their individual rhythyms in his tiny chest.
Nothing about my pregnancy was worrisome. My little boy was born at 12:03 pm on May 7, 1990. But we did not notice that his hands and feet were greyish; we were told that his blood sugar was low. They said the sugar was okay, and we were sent home with our new baby boy. That night Christopher just screamed most of the night. The next morning I couldn’t wake him up. We rushed him to our pediatrician’s office. “I don’t think he’s going to make it” the doctor said. “Make what?” my husband asked, not comprehending. The doctor said that Christopher might not live even anther half hour. He called for an ambulance. Almost miraculously, with emergency treatment at Children’s Hospital of Pittsburgh, Christopher did live and even perked up.
Doctors suspected that while still in the womb, Christopher caught a viral infection that was severe enough to damage his heart. Because his heart pumped so poorly, fluid built up in his chest, just as with older people in congestive heart failure. So Christopher, our newborn baby boy, now had to take diuretics to get rid of the excess fluid. His condition was called restrictive cardiomyopathy, and there is no cure. The only “treatment” is an eventual heart transplant. The doctors initially said that Christopher would not make it to his first birthday without the transplant.
After about a month in Children’s, we again brought Christopher home. He was happy, but we were worried. My husband would wake from nightmares, with his arms flailing. He’d ask me, “Where are Chris’ wires?” He dreamed that he pulled out the IV’s as he cuddled with Christopher. I remember putting my head on Christopher’s chest while he slept to make sure he was still breathing. And his wringing-wet diapers had to be changed as much as four times an hour because of his medications.
Other than that, Christopher seemed healthy and just kept getting happier and happier with life. Our beautiful blond-haired, brown-eyed boy liftted 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.
Of course his first word was “Dada”. My husband was so proud; he and Christopher were SO close. When Christopher woke up in the morning, he wanted Daddy right away. He didn’t understand or care to understand, when Daddy was at work and couldn’t be with him from the start of the day. Everything my husband did, except for going to work, Christopher was with him.
The first day of Christopher’s pre-school, we were so nervous. But, to look at him, he was pretty much like any other child, except for going to the bathroom so often and being smaller than the other children. My husband was the first parent back to pick Christopher up from school. He saw our son running down the hall, yelling “I’m going to the bathroom!” He didn’t have any trouble with pre-school. When he drew his picture for the class showing us all doing our usual activities, he showed his Daddy at the workbench, his Mommy in the kitchen, his sister Rachel playing with toys - and himself in the bathroom. But he never complained that he could not do all the things that the other children could do. Christopher just simply loved life!
When he started grade school, Christopher met his all-time favorite teacher, Sister Helen, his kindergarten teacher. They just loved each other! When the other children would run around after school, my Christopher would go up to the outdoor statue of the Blessed Mother holding Baby Jesus and say his prayers. Rain, snow, cold or sunshine - it didn’t matter, he’d pray every day. He would usually pray that God would fix his damaged heart, but he also would pray for others as well.
When we went out shopping or to eat or whatever, we made sure we knew wheree to find a bathroom in every store, restaurant or gas station. But my brave little Christopher never complained or felt sorry for himself. He enjoyed life to the fullest, as much as he could. His favorite thing to say was “I’ll try.” He was an adorable, likable, lovable little boy, who generally had a big smile on his face. Christopher loved building his Legos, playing with Batman or Star Wars figures, building and taking apart pretty much everything else. He was a boy through and through. At one point, he wanted to become a pharmacist like his Daddy, but later he decided he’d become a transplant surgeon, he said, “To help save kids like me.”
At Christmastime in 1996, he developed a cough that kept him from sleeping, or even from lying down. Christopher had bronchitus, made worse by his poor heart and lung function. We were able to keep him from staying in the hospital only because my husband took him there twice a week for check-ups. He stayed out of school until March, then was able to return full time. Somehow, this little guy was able to keep up with his school work and move up with the rest of his class. Only, he no longer had the stamina for gym class or recess. Everyday, he got to pick two other children who would stay inside with him after lunch, while the rest of the children had regular recess.
Just before second grade began, I had Christopher try on his school uniform. The pants that had fit when we tried them on two weeks befor would not even pull up over his belly. Lots of fluid had accumulated, swelling and distending his stomache. We now knew that there was no other option. He desparately needed a transplant.
This was toward the end of August, 1997, and we had just found out I was expecting our third child. My husband made sure Christopher was put on the list for the transplant, and they came home from the hospital for lunch. They weren’t home for even ten minutes when the phone rang; it was Children’s Hospital, and they had a potential donor heart. We rushed back to the hospital, but it ended up that the donor heart was no good. The next day I was at Magee Hospital having a miscarriage. As fate would have it, the baby would have been born in March, about the same time that our Christopher died.
It was at this time, the false alarm for Christopher’s new heart, that we were first told a conventional heart transplant wouldn’t save him. His poorly pumping heart had caused too high of a pressure build up in his lungs. While his heart adapted to squeeze so hard to force blood into his lungs, a new heart on its own would not be able to do the work immediately. We were informed that Christopher would probably die on the operating table.
Surgeons decided his only hope was a heterotopic, or piggy-back, transplant. Only about 20 American children have had the procedure, but Christopher would be only the second child at Children’s. Doctors left his own heart in place and added the new heart to make it easier for his system to pump out the blood.
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 short life. We thought now, finally, he’d be able to lead a normal life.
When Christopher came home from recovering from the surgery, the hospital sent us a 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 patiens, 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-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.
He 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 Christopker pleading not to be put back on the ventilator. But I could see he was struggling for air and had to persuade him that he needed help with his breathing. I thought I was saving him!
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 sohe 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.
On March 24th, Christopher’s hearts beat out their unique rhythm for the last time, falling silent at 12:03 am. To his intense relief, my husband was by Christopher’s side at that 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 left the hospital that night, I 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 choiur 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 Christoopher!
I am not the same person I was before, when Christopher was alive here with us. The grief is so all-encompassing there is no room for anything else in my life. I am just lost without my buddy here with me. My heart and soul are gone, there’s no sun in my sky, there’s no feeling left in my life. All I think about is when will I be with him? Christopher came first in our lives, without him I feel there’s no point in going on. I’ve lost my ability to play with my daughter, Rachel, for any length of time. I have no concentration skills, no attention span. I can’t believe that I was even able to write this. But we want everyone, everywhere, to know and remember how very special Christopher was and still is. So my husband and I will do whatever it takes to keep his memory alive. I just hope and pray that people will not forget him. We both wish we could have our little angel back every day.
My husband and I are no comfort to each other, we barely communicate, but we have been able to work on new beginning a new bereavement support group through Children’s Hospital. Other than that, we do nothing else together, everything just hurts too much right now. Poor Rachel has learned that mommy is going to be sad no matter what, she doesn’t like me much right now. Fortunately, she is really too young to comprehend that she will not see her brother again in this life. I think our dog, Shadow, even misses Christopher, I find her up in his room, sometimes under his bed. My mother and I talk a lot more now about things, I think we are closer now. My father has opened up to me also. Unfortunately, my mother-in-law has basically disappeared because her second-youngest daughter Judy is getting married in two months. That’s keeping them all quite busy, so we are kind of forgotten right now. Judy just doesn’t understand, so I don’t even talk to her. In fact, most of Christopher’s aunts and uncles on my husband’s side are leaing us alone right now. Unfair but true! Unless they call my husband at work and he just doesn’t mention it to me... My two brothers call every week and try to invite us to things, such as visiting them, celebrations with them, attending softball games with them. Some friends I can still count on to call me and check to see how I am doing, but many are not comfortable around us and are afraid that they will say the wrong thing. So they just don’t keep in touch anymore. It hurts so deeply over again to know people can really do this to us as we grieve for our son. I guess all I can say is that I’ve survived another day without Christopher here. I don’t feel that I’m doing well at all. I have a lot of trouble sleeping, no concentration, lack of attention span, don’t care about many things, think about Christopher all day - but remember it’s only been a little over two months since he was taken from us. My husband at least can go to work and get interested in something else, but I’m here with the memories all day, every day. Rachel seems to be okay, but she wants her mommy back. She wants more than I can give right now. And she is afraid to let us out of her sight, she did say that she doesn’t want to lose us too.
Christopher’s best friend from school, Matt, is having trouble with this too. He and Christopher share the same birthday, May 7th, so I know Matt will never ever forget Christopher. His mom told me Matt has trouble sleeping now, but he has started keeping a journal, and hopefully, that will help him through this. Matt comes over and visits us about once a month, and I noticed he has trouble talking about Christopher. Our next door neighbor, Chrissy, has been Christopher’s friend and mantor since he was a baby. She is now 13 years old and just graduated from grade school. We don’t see her as often as we used to. I think she is having a hard time with this also. Easter was just too soon after Christopher died; I was a basket case, a complete mess that day. I couldn’t even tell you what family gave Rachel for Easter, because I was so out of it. Then Christopher’s birthday came too soon also, but we spent the day with Matt’s family, since it was also his birthday. That was nice, and I hope we can continue it as a tradition. We lit a candle at the house in Christopher’s memory and of course, visited his grave with some small presents. What else can you do?
Mother’s day - yuck!! Although, I did get to talk about Christopher on television. All three of our major stations came out and interviewed me and three different stories aired over mother’s day weekend. So we got to watch and cry together. My husband bought me a statue of the Blessed Mother and said it was a gift from Christopher, since he always prayed at the statue at his school, but I’d rather just forget about mother’s day for awhile.
Father’s day is coming up. I don’t know what my husband wants, but sincce Christopher loved what he called an “Eat Out”, we will take my husband out to dinner. Then, I’m thinking of donating a couple of books to the local library in Christopher’s memory for a father’s day surprise for my husband. Also coming up this month is the week that we would have taken Christopher to Disney World for his wish from the Make-A-Wish Foundation. He was going to build and buy legos in the Lego Imagination Center there. Now what do we do that week - the week of June 14th? We may take Rachel to Storybook Forest with some friends, but other than that we will probably talk about what should have been.
Luckily, we haven’t yet gotten to the death “anniversary” - can’t we call it something other than that? When my wedding anniversary comes later this month, using that same word will just make me shudder. What do people do on this tragic occasion? I guess we’ll visit the grave and light a candle in Christopher’s memory. I haven’t thought about anything else much. We could host the Compassionate Friends meeting that month or possibly make a donation to the Make-A-Wish Foundation.
We are writing a memory book of Christopher’s life, and we’ve asked many others to contribute their thoughts, such as family members, schoolmates, teachers, friends, doctors, nurses, and even Rachel. Going through photographs to gather as many of him as possible, also any video tapes that he is on (unfortunately, we never had a video camera of our own, bad luck there). We are also compiling together much of his school papers and drawings to keep in a portfolio, but the writing is most helpful. Join any support groups that allow you to talk about your child, share his life and death, and be honest with yourself. We joined Compassionate Friends, we are starting a group through Children’s Hospital, I’ve joined about 4 different groups over the Internet. These groups are really life-savers. Books and poetry can also be very helpful. Check your local library, and also Compassionate Friends has an extensive library. Through them we learned all about after-death communications, which are also very helpful... Of course, you can buy books, but that gets rather expensive. I’ve also borrowed and loaned books with others I’ve met on the Internet.
Copyright 1997-2000 Ethans House,
Inc.
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