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 pediatric 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 in their field. 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 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 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 is a leader in successfully weaning children to the lowest doses possible after transplantation, while still maintaining the immune-suppressing function. By three 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 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. The Comer Children’s team remains in close contact with the 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 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.