Christopher Mark Sumner was born in February 1983 in Mountain View, CA. He joined brother Michael, then eight, and sister Michelle, five. He was two weeks late requiring induced labor. Our pediatrician, Dr. Ross, joked that he was a little "over baked," but fine overall. Mark and I were delighted with our beautiful little boy.

At Chris’ two week checkup, everything was  textbook. He had gained a little weight, was nursing and seemed to be progressing just like our other two children.

It was the day of my six week postpartum checkup with my obstetrician that everything changed. Dr. Pokorny noticed that Chris was jaundiced, so he sent us to see our pediatrician, who in turn sent us to the hospital for blood tests. By the time the lab technician was finished drawing blood from Chris’ tiny heel, I was crying right along with him. I think one of the hardest things we parents must endure is holding our child during a medical procedure.

That evening Dr. Ross called with the results. There was a problem and he wanted Chris in his office immediately. He recited all of the things which can cause jaundice in babies, the worst of which was something called biliary atresia. But, he assured us, this was very rare and probably not the case. More tests were needed. Within an hour, Chris was admitted to Stanford University Medical Center.

Three days and multiple tests later, we were sent home to await the results. We were worried, but hopeful. When the results all came back negative, Chris was admitted again for more tests. Doctors inserted a nasogastric tube into the second portion of Chris’ duodenum to test for bile drainage. None was found, so Dr. Shochat, a pediatric surgeon at Stanford, recommended exploratory surgery. During surgery, a cholangiogram was performed and it showed blockage of the extrahepatic bile duct. This was conclusive proof of biliary atresia. In one minute we went from everything will be O.K. to nothing will ever be the same. I have to say at that point I completely lost it. I remember little of the rest of that day.

Dr. Shochat performed the Kasai procedure, removing the damaged bile duct and replacing it with a short section of intestine. In those days, Kasai procedures were often left open, which meant that the new bile duct was cut in two, and the open ends left exterior to the abdomen (called stomas). This way, bile flow could be observed. An ostomy bag was fitted around the stoma, and twice each day the bile was collected, measured, then reintroduced into the intestinal tract with a catheter through the stoma.

Knowing that increased bile production was our ticket home, my engineer husband plotted a chart of each day’s production to show doctors the improvement. One month after surgery, well trained in stoma care, we were discharged. Amazingly, Chris was a happy little baby and seemed none the worse for the whole ordeal.

Everything went along great for about three months. Then, during a sightseeing trip in San Francisco, Chris started bleeding around the stoma. He was very pale and did not respond to me. In a panic, I opened the ostomy bag, put pressure on the stomas and we rushed to a nearby hospital. His hematocrit was at an acceptable level and the bleeding had stopped, so we were released. The next day he was admitted to Stanford for a blood transfusion. It turned out to be just the first of many to come.

It became a joke in the emergency room — "What is the hematocrit today, Mrs. Sumner?" I was never off by much.

From that point on, we dealt with bleeds, urgent trips to the emergency room, and transfusions on a regular basis. It even became routine for us to carry Dr. Shochat’s preferred size and type of stitching thread. Soon, I could predict Chris’ hematocrit just by looking at a small birthmark on his upper lip. It became a joke in the emergency room — "What is the hematocrit today, Mrs. Sumner?" I was never off by much.

We realize now how blessed we were to have had all Chris’ blood transfusions at Stanford. They were checking for the AIDS virus long before the Red Cross blood supply was being routinely checked.

Through all this Chris somehow managed to keep growing and gaining weight. The surgeons at Stanford discussed transplantation with us several times; but, because he was stable, they advised us wait as long as we could.

In late 1984 we moved to Southern California. The decision to move was not difficult. UCLA was the only place in California that performed liver transplants, and our families lived in the Los Angeles area. It was important to us that Michael and Michelle not miss any activities due to Chris’ illness. Without my parents’ help that would not have been possible.

When Chris was two years old, we took him to see Dr. William Berquist at UCLA for a transplant evaluation. Many tests were done and Dr. Berquist spent a great deal of time talking to us about liver transplantation. "But he only has a bleeding problem, can’t we wait?" we asked. The discussion went back and forth. We even took Chris to the University of California at Davis in Sacramento to see Dr. Cox and Dr. Cannon for a second evaluation.

The truth is that no one really knew how long Chris could wait or how much time he really had. Liver transplantation was still a new science. The agonizing decision was ours to make. We chose to wait, not knowing if our decision was the right one. Both evaluation teams agreed there were two signs that would definitely signal time for a transplant: deterioration of the synthetic liver functions determined by blood tests, or if Chris stopped growing. Dr. Berquist agreed to work with us to monitor these signs over the next year.

By the time Chris was 3 years old, he was showing delays due to vitamin deficiencies. He was not talking yet, so we had a speech therapist and home teacher working with him. His liver function tests became worse and his growth slowed, then fell off the charts. We knew it was time.

My grandmother had never seen or held Chris and it was important to me that she did. We understood the urgency of the situation, but we decided to take all the children to St. Louis for a family reunion. When we returned Chris was officially placed on the UNOS waiting list.

By September, Christopher’s health was failing. His stomach was so filled with fluid that he could eat and drink only small portions at a time. We were up at night with him all the time. Mark and I would be so tired that at times it was hard to function during the day. I don’t know how Mark was able work and never let anyone know how bad things were. But he did it. We both did.

As Chris became sicker, I remember telling Dr. Berquist how I felt unable to pray for a liver. I didn’t want to pray for someone else’s child to die so my son could live. Dr. Berquist answered "Some child will die anyway. You are only wishing and praying that his or her parents will have the strength and courage to donate those organs to help someone else’s child." I don’t know if he ever knew how those words gave me the courage I so desperately needed.

After five months of waiting, we got word there was a liver for Chris. As luck would have it, Mark was on a business trip in Hawaii when the call came. Chris and I flew to UCLA on a helicopter and arrived within 30 minutes.

Unexpectedly, Chris had a fever upon arrival. The team discussed waiting until the next day to do the transplant. If they could load him up with antibiotics overnight and control the fever, they would go for it the next morning. But a few hours later, the nurse coordinator came to tell me that the donor family would not hold over. The liver would go elsewhere. Although I certainly understood the feelings of the donor family, I was devastated. And then there was Mark, worrying on a plane somewhere over the Pacific, not knowing the transplant had been called off. . .

Chris’ health began to deteriorate rapidly. He was in the ICU and needed blood products daily. He was making no platelets on his own. He was at the top of the list and we knew there was very little time left.

During one of his daily visits, our transplant surgeon, Dr. Busuttil, casually asked "You have arranged for at least 35 pints of blood to be donated in Chris’ name for the surgery, haven’t you?" We were stunned. No one had told us! It was December and blood supplies often run short during the holidays. The last thing we wanted was for a liver to become available without enough blood available for the transplant! We called relatives, friends and neighbors. Mark’s parents quickly organized a blood drive at the high school where they both worked. By Friday, over one hundred pints of blood had been donated on Chris’ behalf.

Friday night, got word there was another donor liver for Chris. We took pictures of Chris that night, and my parents brought Michael and Michelle to visit. Chris would be the 92nd liver transplant performed at UCLA.

Saturday morning, Chris was prepared for the transplant with a complete blood exchange. Mark had a bad cold and couldn’t risk giving it to Chris, so I stayed with him until it was time to go to the operating room. We followed the gurney down the elevator all the way to the doors of the operating room. Nothing can prepare you for those moments just before the door closes and a well meaning nurse says "We will take very good care of him."

Nothing can prepare you for those moments just before the door closes and a well meaning nurse says "We will take very good care of him."

We were told that the helicopter with the donor organ would soon be arriving on the hospital roof, so we went up to the fifth floor to watch it land. Out came three doctors carrying a red Igloo cooler. To this day I can’t look at a red Igloo cooler without remembering that day.

For the next 10 hours we waited. Dr. Busuttil called out every so often with word on their progress. Chris was finally out of surgery and taken to the pediatric ICU at 10:30 that evening. Dr. Busuttil stopped to talk to us briefly after the surgery. He looked exhausted as he explained that even though the liver was from a much younger child, it was still too big for tiny Christopher. In his words, he had to "shoe horn it in." In all, 28 pints of blood were used.

The next morning, the transplant team gave us bad news. Overnight, his liver numbers had climbed very high, much higher than they had ever seen for a successful transplant. Chris was put back on the waiting list and for the next few days we waited and watched. On the second day, his liver numbers were down by half. On the third day, half again. Within a week, his numbers had dropped to a point that he was removed from the active waiting list.

But now we were battling a massive infection of the incision and rejection. The first two rejection episodes were checked with conventional drug therapy. The third time, these methods didn’t work. Chris’ doctors proposed treatment with an experimental drug, called OKT3. I had watched several other children become very sick from OKT3 and I was afraid of it. Finally, after consulting with Dr. Berquist, I signed the papers and Chris was moved to the ICU to start the therapy. Chris spent the next 10 days in the ICU with every possible side effect. But, the ever important liver numbers returned to normal levels. It had worked.

Eventually, we were out of the ICU and out on the floor again. Parents who have been in this position can relate to this — When you’re out on the floor, you’re that much closer to the front door!

On Christmas eve, I left the hospital to spend some time with Michael and Michelle. We met at relatives’ home for dinner, but Michelle wasn’t feeling well, so we left early, taking with us a wonderful plate of homemade tamales. Taking our first curve, I saw something fly off the top of the car. "What was that!" I shouted. Michael quietly answered "I think it was your dinner." My first home cooked meal in weeks was now scattered across the street.

Just when things were going pretty well, there was another setback. Chris awoke one morning calling for me. Although I was right in front of him, he couldn’t see or hear me. No one could figure out what was going on. Dr. Feingold, the ICU resident, drew blood and literally ran it to the lab. He returned with news that Chris needed to be put on the respirator immediately.

For some reason, Chris’s blood gases were bad. As they were rushing him to the ICU, he began having a seizure. In the ICU, they had trouble intubating him. By then, Dr. Busuttil was there, along with everyone else you can imagine. It’s such a terrible, helpless feeling to look through a small ICU window at a team of doctors and nurses frantically working on your child. When they finally got him stabilized and on the respirator, he was taken for a CAT scan. Dr. Busuttil was so kind to keep coming out to tell us what was going on.

It turned out that Chris had suffered a stroke, about the size of a dime, in the upper left part of his brain. We were devastated. After everything that had happened, Chris had always pulled through. Why this? We waited for a week not knowing how much damage had been done. Finally, he was taken off the respirator. After many tests, there appeared to be no permanent damage.

Eight weeks after his transplant, Chris was discharged. It was the day before my birthday. My mother took Michael and Michelle out of school early so they could be there for our grand homecoming. Even our local newspaper was there. It was a wonderful, joyous day. And what an unforgettable birthday present for me!

Over the next couple of months, Chris was in and out of the hospital, the most serious time due to septic shock, which required another emergency helicopter flight to UCLA. Chris’ three flights on the helicopter earned him the unofficial "most frequent flyer" award at UCLA.

Then in April, the "switch clicked"— that’s the only way I can think to describe it. Chris became much stronger and healthier. His hospital days were finally behind us.

We celebrate the 12th anniversary of Chris’ transplant this year, and he is every bit a normal, healthy teenager. He will be 16 in February and I sometimes joke that I would love to get him an "attitude transplant"! But, seriously, it really is wonderful to deal with just some of the normal worries for a change. He’s a freshman in high school, loves roller-blading and cycling; and he’s in his fourth year of Boy Scouts. Unless he raises his shirt to display his many scars, you would never suspect his ordeals.

We wanted to tell our story and to thank Dr. Pokorny, Dr. Ross, Dr. Shochat, Dr. Shaw, Dr. Busuttil, Dr. Berquist, Dr. McDiarmid, Dr. Vargas, the entire UCLA transplant team, and many others for saving our son’s life. But most importantly we thank our donor family. Without their precious gift, there would have been no transplant.

I remember after Chris’ Kasai procedure, we went to a picnic where there were other children who had liver disease, even one who had a transplant. It was a real morale booster to see children who had successfully beaten liver disease. When Chris was in the hospital, all we ever saw were the really sick kids. To know that there really was hope gave us strength during the difficult times. And this is one of the most important reasons we started C.L.A.S.S