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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.
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.
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.
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.
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.
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 from a child’s incision or in the gastrointestinal tract is a possible complication that can be handled if identified quickly.
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 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, 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.
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 at Boston Children’s 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.
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:
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.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”