FAQs for Patients
- Why is pediatric liver transplantation performed?
- What diseases damage the liver so severely that transplantation is needed?
- What kind of evaluation is needed to determine whether my child is a candidate for transplantation?
- Where do donor livers come from?
- How are livers from deceased donors allocated to the children who need them?
- How is a living-donor transplantation scheduled?
- Once my child leaves the hospital, what happens?
Why is pediatric liver transplantation performed?
The surgery is required when the liver is so badly and irreversibly damaged that a transplant offers the only chance for the child’s long-term survival.
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What diseases damage the liver so severely that transplantation is needed?
There is a long list of diseases and conditions - many of them quite rare - that create a need for transplantation. Here are the principal ones:
- Congenital malformations of the liver - abnormalities present at birth
- Metabolic liver disease
- Acute hepatic necrosis (death of liver tissue) due to:
- Viral infections
- Unknown causes
- Cirrhosis - a chronic problem that impairs the liver’s ability to remove toxins (poisonous substances) from the body
- Autoimmune - cirrhosis resulting from the body’s own immune system attacking the liver
- Cryptogenic - cirrhosis that has an uncertain cause
- Resulting from total parenteral nutrition (TPN) therapy - liver disease associated with small intestine failure and TPN
- Cholestatic liver disease
- Liver tumors, both malignant and benign (noncancerous)
- Other diseases and conditions
What kind of evaluation is needed to determine whether my child is a candidate for transplantation?
Before final selection and listing for liver transplantation, the child undergoes a multidisciplinary pretransplant evaluation to determine the current status of the liver disease and the extent of its progression. All outside medical records, radiological studies, and liver biopsy materials are reviewed. Consultations are done by the transplant hepatologist, surgeon, and child development specialist and social worker. A pretransplant education class is conducted by the transplant coordinator and the family meets with our hospital-based parent mentors.
Assessments may include:
- Medical, surgical, and support staff consultations
- Transplant surgeon
- Transplant coordinator
- Blood tests
- Imaging studies and other tests
- Ultrasound of the liver
- Liver biopsy (optional)
- Psychosocial and developmental evaluations
- Social worker
- Child development expert
UNOS is a private non-profit organization that works under contract to the U.S. Department of Health and Human Services to promote organ donation and transplantation. UNOS administers the national waiting list and coordinates the matching and placement of donor organs. UNOS also collects, validates, and maintains data on all organ donors and solid organ transplant recipients.
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Where do donor livers come from?
There are two sources: living donors and recently deceased donors. Deceased donors are individuals whose organs have been made available for donation at their own request before death or by their families after death. The types of deceased-donor transplants include:
- Full graft liver transplantation - The entire liver from a deceased donor is transplanted to a recipient of similar body size.
- Reduced-size liver transplantation - A liver from a larger donor is trimmed to fit a smaller recipient.
- Split liver transplantation - A large liver is split and shared between a small adult (right lobe) and a child (left lobe).
How are livers from deceased donors allocated to the children who need them?
A national waiting list is maintained by the Organ Procurement and Transplantation Network (OPTN). Basically, the sicker the child, the higher he or she is placed on the list. The exact policies are detailed on the OPTN Web site.
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How is a living-donor transplantation scheduled?
One of the advantages of living-donor transplantation is that the procedure can be scheduled at a time that works best for both donor and recipient. For the donor, the major issue is his or her work and family schedule. For the recipient, the principal constraint is health condition and control of complications. For example, if the recipient develops a sudden fever, the procedure will be delayed until the cause is found and any potential infection controlled.
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What is the postoperative period like for the child who receives a transplanted liver?
The length of hospitalization will vary, depending on the individual patient. A typical hospital stay for school-age children is seven to 10 days. Infants are usually hospitalized for two to three weeks following the transplant procedure.
Patients are placed on immunosuppressive drugs to prevent rejection of the transplanted liver. The doctors may perform a liver biopsy to check for signs of rejection. Rejection may be managed by increasing or adding immunosuppressive drugs. Since patients on immunosuppression are vulnerable to bacterial and viral disease, patients are monitored for signs and symptoms of infection.
The transplant team also monitors the child for signs of bleeding and other potential postoperative complications. Occasionally, a patient will have to return to the operating room for evaluation and treatment of a postoperative complication.
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Once my child leaves the hospital, what happens?
Physicians and nurses from the Pediatric Liver Transplant Program and the child’s local pediatrician monitor transplant recipients after discharge from the hospital. Initially, the patient visits the Pediatric Liver Transplant Clinic twice a week for laboratory work and physician examinations. As recovery progresses, these visits become less frequent. Our team will continue to be a part of follow-up care even after the patient is able to return home. To make it easier for families, the Pediatric Liver Transplant Program runs outreach clinics throughout the year in Hawaii, Portland, Seattle, Sacramento, Fresno, and Oakland.
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