Pediatric Liver Transplant
The Pediatric Liver Transplant Program at the University of Chicago Medicine Comer Children’s Hospital is one of the most experienced and innovative programs in the United States. Babies and children from throughout the Midwest and even around the world come to Comer Children’s Hospital for this complex procedure and for comprehensive care before, during and after transplantation.
Addressing Liver Problems in Children of All Ages
Liver transplantation is a suitable treatment for children with a broad range of liver disorders. Some of these problems become evident within a few days or months after a baby is born, so many of the transplants we perform are for babies and toddlers.
Diagnoses that may signal the need for a liver transplant include:
- Extrahepatic biliary disease: Biliary atresia is the most common reason for a liver transplant among children. Primary sclerosing cholangitis also is a common indication for liver transplant.
- Intrahepatic biliary disease, including progressive familial intrahepatic cholestasis, Alagille syndrome and idiopathic neonatal hepatitis
- Fulminant hepatic (liver) failure
- Metabolic liver diseases including urea cycle defects, tyrosinemia, glycogen storage diseases, neonatal hemochromatosis and hyperoxaluria.
- Chronic hepatitis, including viral, autoimmune and idiopathic hepatitis.
- Hepatocellular carcinoma (hepatoma)
- Crytogenic cirrhosis
Common symptoms that may indicate the need for further testing and possible transplant include: jaundice, ascites (accumulation of fluid in the abdomen), bleeding episodes or poor growth pattern.
Comer Children’s Hospital offers the full range of surgical and non-surgical treatment options for children with liver disease. Treatment recommendations are based on a thorough assessment of the child’s diagnosis, overall health, and other important factors. In some cases, our team may recommend medication or a less-radical surgery instead of organ transplantation. For example, some babies diagnosed early with biliary atresia may be cured with timely "Kasai" portoenterostomy surgery. Other children may avoid the need for a liver transplant with medical therapy of their liver disease.
A Range of Transplant Options
Comer Children’s Hospital is on the leading edge in pediatric liver transplantation, and offers a variety of donor and transplant options, including cadaver, living-related donor, and living-unrelated donor. Many of these techniques have helped to lessen the nationwide problem of organ shortage for children who need a liver transplant.
Our surgeons are experienced in all types of liver transplant methods, so they can offer the best option to meet each child’s needs. Ultimately, the surgeons’ expertise means shorter wait times and better results for each child.
Surgeons here perform all types of liver transplantation, including multiple-organ transplants:
Segmental ("Split") Liver Transplant
The liver is the only solid organ that can regenerate itself. That means surgeons can transplant a small segment of a donor’s liver (small enough to fit the baby or child), and the segment will grow as the child grows. Segmental transplants can use liver tissue from living or deceased donors.
- Living-donor transplant (related): A parent or other adult relative donates a portion of their liver to the child (about one-fifth of the adult organ). The donor faces minimal risk from this elective surgery. A living-related donor transplant gives the child the best chance for full recovery and normal health.
- Living-donor transplant (unrelated): Because a biological match is not essential for the donor tissue, an adult who is not related to the child can be a viable organ donor. However, this is an elective surgery, so we only accept unrelated donors who know the child’s family and therefore has an emotional attachment to undergo surgery. (ie, no “Good Samaritan” donors).
- Segmental from cadaver: A portion of the liver from a deceased adult or child may be used for a child’s transplant. More than 20 years ago, surgeons at the University of Chicago Medicine performed the first split-liver transplant in the U.S., in which one organ from the donor is divided ("split") for transplantation to two children recipients.
Whole Organ Liver Transplant
This is the oldest and most traditional approach to liver transplantation. A whole organ transplant uses the entire liver from a recently deceased donor. The donor’s liver must be small enough to fit the recipient.
Approach and Expertise
We provide care for children from diagnosis and transplantation, through long-term follow-up. Many of our patients remain under the care of the pediatric transplant team -- in particular their pediatric hepatologist (liver specialist) -- for the remainder of their childhood. Physicians here also coordinate and communicate with the child’s regular pediatrician or gastroenterologist closer to home to assure a smooth continuity of care that addresses the child’s ongoing healthcare needs.
Once diagnostic testing has been completed, the hepatology team plays a critical role in managing the child’s health as he or she awaits transplantation. Because of the shortage of donor organs available, this waiting period may take weeks, months or even longer.
If your family decides to pursue a living-donor option, the wait period usually is shorter. The University of Chicago Medicine treats both pediatric and adult patients, so we have the resources to care for adult donors and children recipients right within the same medical center. This allows for close coordination between the adult and pediatric care teams, and close communication between the donor and the child’s family.
Our transplant surgeons are experts. The University of Chicago transplant surgeons have extensive experience and outstanding skills that have earned them recognition nationally and internationally. They specialize in all types of transplant surgery for children and adults. Whether a transplant involves the liver, kidney, pancreas, heart, intestine or multiple organs, it is a highly complex surgery that requires the finely tuned surgical skills of a specialist.
Comprehensive care provided after liver transplantation is essential to the child’s long-term recovery and healthy development.
Immediately after surgery, care in Comer Children’s Hospital Pediatric Intensive Care Unit (PICU) is provided by a cohesive team that includes pediatric critical care physicians and intensive care nurses, the transplant surgeon, pediatric hepatologist, transplant nurses, and other members of the extended care team. Once the patient is more stable, he or she is transferred to another nursing unit within Comer Children’s Hospital to complete the recovery process and get ready to return home.
Long-term monitoring is important to assure the child’s ongoing health. Outpatient medical visits and blood testing continue at a frequency that tapers over time, according to the child’s condition and absence of complications or illnesses.
Expertise in Immunosuppression
Immunosuppressant medications are necessary after liver transplantation to help fight against organ rejection. Because the transplanted liver comes from someone else and therefore is "foreign" to the child, his or her immune system tries to attack the new liver. This is the body’s natural response.
Immunosuppressants are drugs that suppress the immune system. These drugs are essential after transplantation, but they also can cause serious side effects. Comer Children’s Hospital is a leader in successfully weaning children to the lowest doses possible after transplantation, while still maintaining the immune-suppressing function. By one to two months after transplantation, many of our patients no longer take powerful corticosteroid drugs. A few patients have been weaned from immunosuppressants completely, although most continue to require a low level of these drugs for the rest of their lives.
As the child grows, the hepatology team adjusts medications to accommodate the child’s changing physical needs.
Making Care Convenient
In the weeks after transplantation, many families stay in the Ronald McDonald house so they can be close to their University of Chicago physicians and care team. After about a month or so, most children are ready to return home.
Some children continue to come to Comer Children’s Hospital for years for their long-term follow-up care. But many of our patients come from beyond the Chicago area, throughout the Midwest or even across the globe -- so they return to their home physicians for long-term follow-up. Comer Children’s Hospital team remains in close contact with patients’ home hepatologist or gastroenterologist to assure proper long-term follow-up and to promote a smooth transition to an adult hepatologist as each patient nears adulthood. For patients who come to Comer Children’s Hospital from outside the U.S., members of our pediatric liver transplant team may even travel to a region that has drawn many transplant patients, to provide follow-up care and monitoring care for a group of patients.
Dedicated Care Team Supports Each Patient’s Recovery
Our care team is dedicated to helping each child grow into a healthy adult. Many different types of specialists work together and contribute to the care of each child. The core team includes transplant surgeons, pediatric hepatologists/gastroenterologists, nurses with advanced training and many years of experience in pediatric liver transplantation, registered dietitians, child life specialists and pediatric social workers. Other specialists also support each child’s care at different points on their path from diagnosis through recovery, including pathologists, immunologists, anesthesiologists, pediatric critical care physicians and nurses, and financial counselors.
Enabling children to live healthy, active lives after transplant is our primary goal. This medical center has led the way in surgical innovations that reduce the chronic shortage of donor organs and save children’s lives. These innovations mean shorter wait times, so many children can receive a liver transplant before they become very sickly.
Through its membership in the SPLIT (Studies in Pediatric Liver Transplantation) Research Group, Comer Children’s Hospital is one of 28 hospitals in North America participating in collaborative studies aimed at improving long-term outcomes for children and their liver grafts after transplantation. This research includes a comprehensive national database for pediatric liver transplantation. Analysis of this data offers insights that are helping transplant teams refine care protocols before and after transplantation.