The Liver Transplant Program at Children’s Hospital of Philadelphia does around 20 pediatric liver transplants a year for children suffering from a host of conditions, including biliary atresia. Our team has been working together for years. In addition to liver transplant, surgeons at Children’s Hospital are extremely skilled in performing the Kasai procedure to delay the need for transplant and in transplanting even the most complex cases, including very sick children and newborns whose tiny bodies require the utmost precision. We meet families at one of the worst times in their lives and support them throughout the transplant process.
Liver Transplant in Children and Teenagers
Mara, Annie's Mom: It was February 13th and my daughter had just celebrated her 8th birthday. Two weeks later, they're telling me she may not even make it through the night.
Ramon, MJ's Dad: When my son MJ was born, he spent three weeks in the hospital because they couldn't control his bilirubin levels. It was a scary situation.
Lissa, Mya's Mom: When Mya was 5 weeks old, we noticed that the whites of her eyes had turned yellow. Her whole body was yellow. We rushed her to the pediatrician and they said, “We can't help you; you need to go the CHOP.”
Elizabeth Rand: The most common serious liver disorder we see at CHOP is biliary atresia. This condition accounts for roughly 40 percent of pediatric liver transplant performed throughout the world.
Kim Olthoff: Many of the children we see with biliary atresia often need a transplant in their first years of life. And when we have the conversation with some parents about liver transplantation as a viable option for their child, it can be a very hard fact for them to process.
Rachel Goldberg: Often, we can perform a procedure to help the bile flow from the liver called the Kasai procedure. And while this procedure may help a child to forgo a liver transplant until later in life, it often delays the inevitable.
Lissa, Mya's mom: Persistent GI issues left Mya unable to absorb the nutrients from what she ate. She was malnourished, tired all the time and so unbelievably thin. She had to be hospitalized several times and get a feeding tube. She missed a lot of school and couldn't do any of the things her friends were doing because she felt so sick all the time.
Ramon, MJ's Dad: MJ went into liver failure when he was 8 years old. His liver couldn't filter out the poisons in his body and it got into his blood stream and made him itch. He would itch all day and all night. It was so bad that he couldn't sleep. His body also couldn't process any foods, so he was malnourished and tired most of the day. He suffered through many hospitalizations and feeling sick for a while and by age 9, he needed a new liver.
Mara, Annie's Mom: For eight years, Annie had been a very healthy little girl and then suddenly, because of some unknown virus, she became jaundice, she couldn't walk, and we were told that she needed a life-saving liver transplant to survive.
Elizabeth Rand: Thirty or 40 years ago, these children would have died from liver failure. But now we can do a liver transplant and give children a normal quality of life.
Rachel Goldberg: Some of our patients receive care for chronic liver failure for a while and then their condition gets worse to the point that they need a new liver. While other patients come to us after a sudden infection that causes their liver to shut down and their need for a liver is urgent.
Elizabeth Rand: Whatever the circumstances, our team comes together and meets with families to walk them through the entire transplant process and to answer each and every question they have.
Lissa: Mya's had a whole new life since her transplant. That part has been absolutely phenomenal. It's amazing what a good liver can do. Before, she couldn't play sports, particularly contact sports because of the risk of a splenic rupture. I cried when they wheeled her down the hallway for her transplant surgery, but I was so confident in the transplant team. CHOP's transplant team is one of the best in the country. This is what they do, day in and day out.
Elizabeth Rand: Every member of our team is devoted to our patients and their families. We don't just treat the child, but we seek to treat the whole family. Because even though it's the child who needs the liver transplant, the rest of the family is effected too.
Rachel Goldberg: When children get listed for transplant, a computer algorithm takes the results of their evaluations such as lab work, weight and height and calculates a score that determines your priority level on the transplant waiting list. For children with lower scores there can be a long time between getting listed and getting a liver. The higher the score, the sooner a child will be transplant. But even then, you're reliant on a donor liver coming available.
Kim Olthoff: There are three potential types of donors for liver transplantation. A transplant of a whole liver from a deceased donor, a transplant of just a portion of a liver from a deceased donor, and a transplant of a piece of a liver from a living donor. The liver is an organ that regenerates and grows so when a portion of the liver is transplanted, it will continue to grow in the body over time.
Our team is one of the most experienced in the country. We do around 150 liver transplants a year of which about 20 are children. We have been working together as a team for many years. Our surgeons are extremely skilled in transplanting even the most complex cases including very sick children and newborns whose tiny bodies require the utmost precision.
Jim, Annie's Dad: There was no donor in sight and they didn't know how long it would take until we got a donor. So we asked about the option of Mara becoming a living donor and fortunately, Mara was a blood match.
Part of Annie getting sick, we didn't realize how very fortunate we were to have Children's Hospital so close to us. The professionalism, the friendliness, the comfort, the care, the knowledge, everything you can imagine, it's just such a life-changing experience.
Kim Olthoff: As families get further out from transplant, those bonds get even tighter because as these kids go back to a normal life and experience all those wonderful milestones of childhood, their families will continue to send us pictures and share those special moments with us.
Lissa: I will never forget Dr. Rand's call at 2 o'clock in the morning saying, I think this is it. We got to the hospital around 4 in the morning for Mya's liver transplant.
Ramon: When we finally got the call, a lot of emotions were swirling because we wanted him to get the liver so that he would get better, but since it was surgery, there were also risks involved.
Rachel Goldberg: There are always risks and complications with transplant, immediate and long term complications. You can't really predict who that's going to happen to, so we do our best to prepare families for any potential scenario.
Elizabeth Rand: The first few days after transplant are critical and high stress for families.
We are involved in a minute-to-minute basis in the care in the ICU. Parents are usually surprised to hear that rejection is the least of our worries because it is so easily treated.
The majority of our kids recover quickly in the hospital and return to normal health.
Ramon: The first thing I remember after his transplant was when he opened his eyes, instead of being jaundice, they were white.
Jim: Immediately after the surgery, the doctor said her color started to change. It started from her toes and worked its way up, and the jaundice immediately went away.
Rachel Goldberg: The transformation of a sick child who has liver disease always amazes me. The actual transplant itself is still a little miracle whenever you see it happen. I think what really makes an impression on you is how the children transform so quickly after transplant. Going in, they are often so sick, then after transplant, they feel better and have more energy. They are finally able to absorb the nutrition they take in, they gain weight and grow. They go back to school, get to hang out with their friends, play sports. You see them in clinic a year later and don't even recognize them. They're happy and look fantastic. It's amazing to hear them tell you how good they feel and how much their life has changed from transplant.
MJ: I feel so much better now. I haven't been to the hospital in two years, and I sleep better 'cause I'm not itching all the time. I have a scar on my stomach from my transplant surgery, but it's awesome; I love scars.
Mya: It's amazing how much my life has changed. I no longer have chronic migraines or some sort of stomach issue and I'm able to go about my daily life without pain. Not needing a feeding tube in my nose was one of the greatest things that's ever happened to me. I never ever could have dreamed my life would be this great, and I'm so incredibly thankful to the amazing staff at CHOP for giving me my life back.
Mara: Annie is doing great. She's playing soccer, she plays tennis, she loves to swim, and she loves riding her bike. She's doing everything she wants to do.
Kim Olthoff: There's nothing more rewarding than seeing a child who's critically ill, dying from liver failure, and you somehow are able to use this gift of life that another family has so graciously offered and change a child's life for the better.