Liver Transplant | Listing & Waiting
After a child is evaluated to determine if transplant is the best treatment option, the team informs the family of the results. They also communicate these findings to the child’s primary care physician and other referring specialists. In all of these situations, the liver transplant team works closely with the family and the child’s physicians to develop a coordinated care plan.
Listing for liver transplant
If a decision has been made that a deceased donor liver transplant is the most appropriate treatment option, the child will be “listed” on a national computer system, United Network of Organ Sharing (UNOS), as a potential transplant recipient. UNOS matches organ donors by weight and blood type with individuals waiting for a new liver.
UNOS receives data from hospitals and medical centers throughout the country, regarding adults and children who need organ transplants. The Pediatric Transplant Center is responsible for sending the data to UNOS and updating them as the child’s condition changes. Criteria have been developed to ensure that all people on the waiting list are judged fairly as to the severity of their illness and the urgency of receiving a transplant. Once UNOS receives the data from local hospitals, people waiting for a transplant are placed on a waiting list and given a “status” code. The people in most urgent need of a transplant are placed highest on the status list and are given first priority when a donor liver becomes available.
Waiting for liver transplant
The wait can be from days to months to more than a year, depending on the severity of illness, blood type, and weight. Transportation arrangements are planned by the recipient’s family to reach the hospital in a timely fashion. All families are required to complete a contact sheet, so the transplant team can locate them at any time when an organ becomes available.
The goal during waiting is to preserve the child’s current liver function and to ensure the best quality of life possible. The child will have frequent visits to the hospital for periodic check-ups, including physical examinations and blood work.
The liver transplant team supports the family and the child during this waiting period. Our social worker, child life specialist, and child psychiatrist or psychologists are also available to check in with the family as needed.
Liver transplant team: On call 24/7
The Liver Transplant Program has surgeons and physicians available 365 days a year, 24 hours a day, and seven days a week to provide program coverage. A transplant surgeon or transplant physician is readily available to facilitate organ acceptance, procurement, and implantation, as well as to address urgent patient issues.
Liver Transplant | Surgery & Hospital Stay
Liver transplant surgery
A deceased donor liver can become available at any time of the day or night. Timing is critical. We often need to have the child ready to go to the operating room within hours of arrival at Boston Children’s. For a living donor, the time of the surgery will be coordinated with the donor’s surgery at Lahey Clinic.
The child is admitted to the Solid Organ Transplant Floor to be prepared for surgery. An intravenous line is placed and blood tests are done. Surgeons and anesthesiologists meet with the family and child to discuss the upcoming procedure and sign consent forms.
During the time the child is being prepared for the operating room, a surgical team is leaving to obtain the donor liver. The time of the recipient’s operation is planned to match the team’s arrival back at Boston Children’s.
In the case of the deceased donor, it's possible that when the surgical team sees the donor liver, it becomes apparent the organ is not ideal. Because we only transplant an optimal liver, the recipient’s surgical procedure is not confirmed until the team is at the donor hospital. Therefore, a child’s surgery may be cancelled even after receiving medication and having blood tests. If that happens, the child returns home and waits for the next liver assignment.
The transplant operation, which takes about six to 12 hours, involves removing the damaged liver from a child’s body and attaching the new liver. A child’s specific operation is described to the family and they receive progress reports every few hours during the operation.
The transplant recipient will return from the operating room on a cardiac monitor and may also have a breathing machine (ventilator) with a breathing tube in the nose or mouth. In addition, he or she will have several IVs, several tubes coming out of their abdomen, and a large dressing. There also are several types of equipment attached. The child will be in a single room in the Medical-Surgical Intensive Care Unit (MSICU) with visiting limitations to protect them from infection during the early post-operative period.
Possible complications after liver transplant
Rejection
Rejection is a signal that the immune system has identified the new liver as foreign tissue and is trying to attack it. Preventing rejection with immunosuppression medications is the first priority. An episode of rejection of the transplanted liver is very common.
The signs include a low-grade temperature, decreased appetite, abdominal discomfort, joint and/or back pain, tenderness over the liver, increased abdominal fluid, or flu-like symptoms. The child will have abnormal liver tests. Other signs might include a change in the color of the bile (from dark green to light yellow) and a decrease in the amount of bile produced.
Because most people may not have obvious signs of rejection, liver function tests are closely monitored. If they are abnormal, a biopsy may be performed to confirm a rejection episode. If a child has an episode of rejection, the amount of anti-rejection medication is increased or a different combination of anti-rejection medications is prescribed. In more than 95 percent of these cases, adjusting medications will stop rejection.
Infection
The anti-rejection medications that a transplant recipient is taking to prevent and treat rejection tell the immune system to accept the new liver. In doing so, they also can be telling the immune system to accept other things that it would ordinarily fight. In other words, the anti-rejection medications put a child at risk for developing an infection. The most common infections result from viruses that have been lying dormant in a child’s system or in the donated liver. To prevent infection, a recipient takes anti-bacterial, anti-viral, and anti-fungal medications for several months after transplant.
If an infection is suspected, sputum, blood, and urine samples may be taken, as well as samples from the child’s catheter, wound, and drain sites. Symptoms might include fever, tiredness or fatigue, diarrhea or vomiting, redness or drainage around the incision, bile, or tube site, or a cough, or a sore throat. If a child develops an infection, it is treated with medications specific for that infection.
If infection develops after the recipient has been discharged, it is usually treated with antibiotics as an outpatient. However, some people need to be readmitted for treatment with IV medications.
Primary graft non-function
On very rare occasions, a new liver does not function properly, or at all, after the operation, and a second transplant operation must be performed urgently.
Bile duct complications
The new bile duct that was connected during surgery may leak or become blocked after the operation. A painless x-ray (called a cholangiogram) might be taken that involves injecting x-ray or contrast dye into the tube to see if there are problems. Most bile duct problems can be treated without further surgery, but some do require another operation.
Vascular complications (problems with blood vessels)
On rare occasions, problems may arise with the new connections between the veins and arteries of the new liver and those in a child’s body to which they are connected. Laboratory tests, ultrasounds, and x-rays help the transplant team determine if problems are present. Occasionally, surgery is necessary to correct these problems.
Bleeding
Bleeding from a child’s incision or in the gastrointestinal tract is a possible complication that can be handled if identified quickly.
Post-transplant lymphoproliferative disease (PTLD)
Children who receive immunosuppression for organ transplants may develop a disorder in which lymphocytes (a particular kind of white blood cell) start growing in an abnormal fashion. This is usually triggered by an infection with or reactivation of Epstein-Barr virus (EBV), which infects B-cells, a certain kind of lymphocyte. These abnormally growing cells may be found in lymph glands anywhere in the body, or in organs such as the intestine, the spleen, and even the liver graft itself.
Lowering the amount of immunosuppression can reverse the early stages of PTLD, but sometimes other treatments are necessary. Uncommonly, PTLD can progress to lymphoma (cancer of the lymph cells), requiring chemotherapy and other medications. Depending upon a child’s history of EBV infection and the type of immunosuppression needed, there may be a risk for PTLD.
The hospital stay following transplant surgery
The average hospital stay is 10 to 21 days, depending on the transplant recipient’s age and size. A few days are spent in the MSICU and the remaining on the Solid Organ Transplant Floor. Transplant recipients go to a single room on the floor when they leave the MSICU. As he or she continues to recover and be monitored for rejection, infection, and other problems, medications are adjusted frequently. A child life specialist and a social worker provide additional support and facilitate coping during hospitalization.
Going home after transplant surgery
Families are encouraged to take an active role in their child’s care while in the hospital. Their role as a partner with the Pediatric Transplant Center becomes more important than ever, because the child’s new liver will need lots of care, attention, and monitoring to do its job. Having a new liver is a lifelong commitment.
Our goal is to have each family feel comfortable and confident with all aspects of care before a child goes home. The patient care coordinator works with the family and their insurance company to set up the medications and any in-home nursing care that might be needed after discharge.
Medications
The transplant team determines the appropriate medications for the child. More detailed medication information is provided once the child is listed for transplant. Most transplant recipients are on medications, which include, but are not limited to, the following:
- anti-rejection medication that is taken as long as the recipient has a functioning organ
- medications to: control blood pressure, as well as protect the kidneys, prevent infections, prevent thrombosis, and protect stomach from acid
The child’s family meets with the transplant pharmacist routinely to review medications, side effects, storage guidelines, and other imperative information for each medication. Taking responsibility for a child’s medications, while at the hospital under the supervision of a nurse, makes the transition to home less stressful.
Liver Transplant | Long-Term Outlook
Living with a transplant is a lifetime journey, and each child and every transplant is different. Most children go to school, participate in sports, work in all types of jobs and professions, and generally lead full and happy lives.
In the beginning, the transplant team wants to see the child frequently for follow-up visits, initially once or twice per week in the Liver Transplant Clinic. Generally, after a few visits, this schedule changes to once per week then every other week. It gradually changes to once a month and then every three to six months.
Our goal after transplant is to return the child and family to as normal a routine as possible. This takes time but will remain our goal. Typically, children return to school about six to eight weeks following surgery, but this can vary on an individual basis.
Tom, 22, received a liver transplant at 15 years old. #becauseofadonor, he was able to run the Boston Marathon.
Physical activity
We want and expect liver transplant recipients to live a fulfilling and productive life. Before the transplant, a child may not have been able to be active (or didn’t feel like being active). However, post-transplant he or she will gradually be able to increase activity.
Children who have had a transplant must avoid rough play and contact sports for the first two months. The transplant team provides specific instructions and recommendations for sporting activities and gym classes.
Medications and adherence
To prevent rejection following surgery, a transplant recipient will need to take several medications daily for the rest of his or her life. A major reason for rejection is non-compliance (the medical term for not taking medications properly). Teenagers, both because they are seeking more control of their lives and because they don't like some of the usually temporary physical effects caused by the drugs, have a tendency to skip their medications.
An episode of rejection can require several visits to the clinic for steroid pulses, or it may lead to a hospital stay for more aggressive anti-rejection medicine. Repeated non-compliance can lead to organ rejection.
We work with teenagers as they begin taking responsibility for their own medications and transition into adulthood. The key is finding what works for each individual to promote partnership and ownership.
Nutrition
Healthy eating habits can make a big difference in a transplant recipient’s long-term health. For the first few weeks following transplant, the child needs extra nutrition to help his or her body heal. Extra calories and protein help the body heal the wound, fight infection, and gain back any weight that may have been lost.
Six to 12 weeks after surgery, the healing process is just about complete, so the calorie and protein needs are not as high. A child’s appetite may improve — both because he or she is feeling better with the new organ and because some of the medications can cause a hungry feeling almost all of the time. It is important to control eating to avoid gaining too much weight and avoid foods that are high in sugar or fat. Our nutritionist works with families in the hospital to plan menus and answer questions.
Growth and development following liver transplant
Our goal is to allow a child to continue to grow and develop similarly to other children of the same age and to participate in age-appropriate activities. We try to keep restrictions to a minimum and to adapt their medical needs to a child's normal schedule and activities.
A child's physical growth is checked frequently, and we make suggestions about diet changes or adjusting calories as needed. We want the recipient to grow along his or her own growth curve following transplant.
We also carefully observe a child's development at regular intervals and may make suggestions for additional services (such as early intervention or physical therapy) to enhance his or her development. Although transplant makes many extra demands on children (hospital stays, blood tests, clinic visits, medicines), most transplant recipients seem to adapt fairly well with our help and support, and perhaps most importantly, their families’ love, concern, and support for them.
