Pediatric Liver Transplantation Information for Healthcare Professionals

Chapter 6: Transplantation Evaluation

Chronic illness can be very stressful for both the child and his family because it changes the family’s life style in many ways.  Transplantation adds further burden to the family.  In order to provide the best medical and emotional care, the pediatric transplant team staff performs a transplantation evaluation.  They will want a clear picture of how stress is handled in the family, so that they will be able to provide emotional support as well as the medical attention necessary for the child and the family.

Your child’s physician and surgeon may have just discussed with you the need to begin the transplant evaluation.  Over the next few weeks your child will have a variety of tests and you will meet with several people who are part of the transplant team.  Each of these people will help make this process a little easier for you and your family.  Most of the initial tests are painless.  However, the evaluation period is very time consuming.  Plan to spend at least several mornings at the hospital completing all of the tests and talking with the transplant team.  You will have many questions during this time.  Feel free to discuss them with members of the transplant team.  Bring a book or favorite toy for your child and snacks for the entire family.

Blood work will be obtained as part of the transplant evaluation.  The blood tests include tissue typing, which is used by the United Network for Organ Sharing (UNOS), to find a donor that matches your child’s tissue and ABO typing to match your child’s blood type.  Also viral cultures will be obtained for CMV (cytomegalovirus); EBV (Epstein Barr virus); HSV (Herpes simplex virus); Toxoplasmosis; Hepatitis A, B and C; Varicella zoster (Chicken pox) and HIV (human immunodeficiency virus).  Three tests will be performed:  (1) an EKG (electrocardiogram) (2) a chest x-ray to see if your child has an infection in his lungs and (3) a duplex sonography scan, another noninvasive study used to assess the size and patency of the hepatic artery, a major blood vessel of the liver.  An updated immunization record will be requested and your child will receive a pneumococcal (flu) vaccination and a series of three Hepatitis B shots.  The Hepatitis B shots will be administered at one, two and six-month intervals, if this immunization was not given to the child in the newborn period.

Finally, you will be asked to meet with a social worker for a pretransplant 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.  The financial information will be reviewed by the financial coordinator to 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.

Over the next few weeks, the surgery nurse or GI nurse will contact your family and arrange for a tour of the PICU (pediatric intensive care unit).  The nurse will also discuss what you can expect in the early post-operative period.  This is a great opportunity to ask questions – so come prepared.

Most children require some blood transfusions during the transplant procedure. Occasionally families ask if they should donate blood prior to transplant surgery, but, because the surgery can not be scheduled, it is better to wait until after the surgery.