CHRISTOPHER – A MULTIPLE LIVER TRANSPLANT SUCCESS STORY
By Roseanne and Kevin Prefer

Introduction
Christopher is now a 2 ½ year old healthy child, but he was not born that way. Here you will find the story of Christopher’s journey before, during, and after Christopher’s three liver transplants.

The Initial Diagnosis / Treatment
Christopher was not born jaundice. His eyes started appearing yellowy between his 1st and 2nd month checkups. We were not aware that it was a sign of liver troubles. At Christopher’s 2nd month checkup the doctors saw his jaundice and immediately had him sent to the hospital for tests. A day later he was admitted to Mount Sinai Hospital. Testing showed Christopher had Biliary Atresia. He was missing the ducts between the liver and the intestines. We were introduced to the Pediatric Gastroenterology team at Mount Sinai, headed by Dr. Keith Benkov. He kept us well informed of Christopher’s condition and recommended surgery.

A day later Christopher had his first surgery; a Kasai procedure at 10 weeks of age. In the Kasai procedure, the surgeon creates new ducts from the baby's own intestines. Dr. Stephen Dolgin performed the operation. He did his best to calm our fears. He is a great surgeon with a superb bedside manner. He and his staff visited Christopher daily after the surgery and were always concerned about our well being at the hospital.

Christopher had follow up visits for several months, but unfortunately his bilirubin levels never came down. A transplant was his only option.

Dr. Benkov explained to us that liver transplants these days went very well and that there shouldn’t be any problems. He got us in touch with the Pediatric Liver Transplant team at Mount Sinai.

Off and Running
We met with Dr. Sukru Emre and Dr. Benjamin Schneider. We heard good things about Dr. Emre from a patient’s family who we became friendly with during Christopher’s stay for his Kasai procedure. They were very pleasant. We were a little nervous meeting Dr. Emre at first. This was the man to whom we were going to entrust our son’s life. We then had Christopher taken for blood tests so he could be qualified for listing for a liver transplant. We thought it might be a few months or more of waiting, but merely 10 days later we got the call to come in to the hospital for the transplant. Things were moving so fast. Christopher was to get the liver from a 3 month old. We felt so happy, yet so sad for the parents of the baby whose life was cut so short.

The Long Journey
Christopher’s first transplant was in March, 2005. He was only 8 months old. We were very nervous. We did not know what to expect. Everything seemed to go well. Our first encounter of Mount Sinai’s excellent doctors came by way of Pediatric ICU doctor, Dr. Bob Mansfield. Besides being so nice, friendly and assuring, he stayed by Christopher’s bedside for over 1 hour, just watching him and making sure he was comfortable and in no pain. This really helped us to calm down and become less anxious. We heard if you pass three days after surgery that things are going to be ok. Unfortunately, two days later Christopher rejected the liver. A clot had developed in the hepatic artery. The only plus side to this event was that the main vein for the liver, the portal vein was still functioning. What this meant was Christopher’s liver was still functioning, but Christopher had to have a collection tube to take out the bile that was being produced. He was listed on the top of the donor waiting list now for a new liver.

During the 3+ weeks we waited for a new liver Christopher jaundice had vanished. At least his skin didn’t have a yellow appearance anymore.

Christopher’s next liver came by way of a bad accident to the son of a friend of Christopher’s grandparents. His name was Anthony Calia. His parents donated part of his liver to Christopher. We thought it was fate that in dying Anthony could save Christopher’s life. It was a story book ending we thought. The liver was a little large for Christopher. He was put under sedation for a few days so he wouldn’t move until the liver shrunk down to fit. During that time Christopher developed several clots. Dr. Emre had to operate each time to remove them. He then said that he needed another liver. We waited just a few more days before receiving another liver from a 41 yr old woman. This was the one for which Christopher was destined. It was given by a true child of God. Her name was Barbara Jean Bernius.

Christopher had trouble coming off the respirator after the last operation. He also became addicted to morphine from all the surgeries. 65 days after he went in for the first transplant he finally went home.

Post-transplant care was great. It has a little harder for us because we live about 40 miles away and we had to go there so many times in the months following the surgery. In the end it was the best for Christopher.

Christopher did have a few episodes where he had to be admitted again at the hospital. This can happen due to the immune system being altered so the body doesn’t reject the liver. We were told usually with time this gets fewer and father between and this seems to be the case.

We can’t say enough about the Pediatric Liver team at Mount Sinai. They truly work well as a team. Dr. Emre and Dr. Gondolesi are very skilled surgeons. God does work through their hands. Dr. Emre has formed a special bond with Christopher and we cherish that.

We can’t say enough about the nurses at Mount Sinai. They fell in love with Christopher and we fell in love with them. We usually visit them when Christopher has clinic appointments. Eden became like an adopted mother to Christopher. She always looked out for Christopher’s best interests. Thank you, Eden and all the nurses. People asked how we had the strength to go through it all. God, family and friends helped us through it. We had to be strong for Christopher.

Now Christopher is like any other 2 year old. We are grateful to all the people who took part and are still taking part in Christopher’s care.

Thanks and God Bless...
Roseanne and Kevin Prefer