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The evaluation period for a pediatric liver transplant can be very stressful on a family and very time consuming, usually involving a few outpatient visits. Johns Hopkins tries to ease this process with dedicated staff to assist families every step of the way. If the child is acutely ill with liver disease, the process can occur more quickly. Parents and children should feel free to discuss any concerns or questions with members of the transplant team.
The transplant evaluation may involve:
In addition, families will meet with a social worker for a pre-transplant psychosocial evaluation. The social worker will gather family information, review financial information and discuss other family concerns as they relate to transplant preparation. Through this informational interview, your social worker can find out what your needs are and provide you with additional resources.
Financial coordinators will review and verify insurance coverage for transplantation. If you change jobs or your employer changes insurance carriers, contact the clinical nurse specialist or the social worker immediately.
In order for a child to receive a new liver, the donated organ must be the correct size to fit into the child’s abdomen. Because of this size restriction, there are several variations of pediatric liver transplants: whole liver transplant, reduced size transplant, and living donor transplants.
A whole liver transplant occurs when an entire liver is transplanted from one individual to another. The donated liver most likely comes from a child donor or small adult. This is the traditional way pediatric liver transplants were managed; however it meant that critically ill children spent a long time waiting for the proper sized organ to become available.
If an adult liver becomes available and is a match for a pediatric patient, a segment of the liver may be used. This procedure has significantly lessened the waiting time for small children and infants, as more organ options are accessible. Using liver segments also means that the same donor organ can be used on multiple pediatric patients.
Healthy adults, most often relatives, may donate a segment of their own liver to a pediatric patient. In both the adult donor and the pediatric recipient, the liver will regenerate over time to form a completely whole liver. If a matching adult is identified, the child will no longer need to wait for an organ to become available and the surgery can be scheduled.
While the risk to the donor is minimal, live liver donation is a major surgery. Donors can expect to stay in the hospital for six to eight days, with a full recovery period of up to eight weeks.
Once your child has been officially listed with UNOS as a candidate for a liver transplant, a waiting period follows until a suitable donor becomes available. The waiting time varies for each child based on organ availability and the pediatric end-stage liver disease (PELD) score. The PELD score prioritizes the wait list such that higher scores typically correspond with more severe liver disease and allows for sicker patients to be ranked higher on the waitlist. As a parent, this waiting time may be a difficult step in the process. Often, parents feel a sense of helplessness and loss of control. The pediatric transplant team will do whatever they can to decrease your anxiety and to allow you to continue your normal activities.
Each insurance company is different. Learn more about paying for a transplant.