More Information about Pediatric Liver Transplants
Pre-Liver Transplant Evaluation
The pre-transplant evaluation enables the transplant team and other specialists to perform a complete assessment on your child to determine if liver transplant is the best option. The process takes two to three days. It will include clinic visits, blood work and other diagnostic testing.
Your family will receive an education binder leading you through the transplant process. You ma ask questions, get to know the team and learn more about our program.
Who you will meet
You and your child will meet with many members of our team. Write down questions that are important to you and bring them to the evaluation.
These are some of the people you will meet.
- A hepatologist, transplant nurse practitioner, and liver transplant coordinator, who will meet with you to discuss your child’s history, current status, and guide you through the pre-transplant evaluation.
- A transplant surgeon, who will talk to you about the transplant procedure and its risks and benefits.
- A transplant pharmacist, who will go over current medications and discuss medication related to the transplant.
- An anesthesiologist and an anesthesia nurse practitioner, who will review your child's medical history and physical status, and discuss general aspects of anesthesia for liver transplantation.
- A social worker, who will interview your family to understand your needs.
- A Child Life specialist, who will explain your upcoming hospital experience and discuss how they can help your child cope during the liver transplant process.
- A nutritionist, who will meet to discuss your child’s nutrition and dietary needs.
- A financial counselor, who will review your insurance benefits and answer any questions regarding the financial aspects of liver transplant surgery.
- Other specialists deemed necessary for the appropriate work-up of your child
Common medical or lab tests
- Blood and urine tests
- EKG and/or echocardiogram to check your child's heart.
- Chest X-ray
- CT scan of the liver
- Lung function tests
We will share all test results and recommendations with you and your referring physician.
What to bring to the evaluation
Most of the time, our office will obtain all medical records, including imaging, immunization records and dental clearance before your pre-transplant evaluation. The following is a list of items to bring with you to the pre-transplant evaluation:
- Complete immunization record
- A letter from your dentist clearing your child for surgery
- Your child's twenty-four-hour urine collection, if you were asked to obtain it
- Your child's medication bottles
- Addresses and phone numbers of other doctors involved in your child's care
- A list of your questions
- Consider bringing another family member to take notes and watch your child
- Toys and games to keep your children occupied during down time
- Extra diapers and formula for infants
- Stuffed animals, blankets, snacks or comfort items to help your child during tests
Waiting for a Liver Transplant
After your pre-transplant evaluation, the transplant team meets to determine whether your child is ready for a liver transplant. Part of the listing process involves obtaining pre-approval from your insurance carrier. However, no child is denied liver transplant surgery based on financial status or background.
Once approved and ready, your child will be placed on the national waiting list. Patients on the national waiting list are assigned a score that prioritizes the transplant need. Children under the age of 12 are assigned a PELD (Pediatric End-stage Liver Disease) score and children 12 and older are assigned a MELD (Model for End-stage Liver Disease) score. The factors that determine your child's score include age and the severity of their illness.
The waiting time for a liver to become available varies greatly. It depends on your child's health and the availability of an appropriate organ. While waiting for a liver transplant, your child will visit monthly with our hepatologist and other members of the transplant team. These clinic visits are important because they helps us determine how your child is doing and whether their condition is stable or worsening.
Liver Transplant Surgery and Recovery
When a liver becomes available, we will contact your family to come to the hospital. We will admit your child to the pediatric intensive care unit (PICU). The waiting time for the liver transplant surgery can range from a few hours to most of the day.
Liver transplant surgery in children usually takes about five hours. Your child will have a large incision across their upper abdomen from side to side, just below the ribs.
After the surgery, your child will return to the PICU. Their stay in intensive care varies with age and medical condition and may last a few days or a few weeks.
Following their stay in the PICU, your child will then move to a hospital room on the eighth floor, in our general and transplant post-surgical unit. Two family members above the age of 18 are permitted to stay with your child overnight. Siblings and family members who are not ill may visit during the day.
While your child is hospitalized, the transplant team will begin your transplant education. You will learn how to take care of your child’s incision, how and when to give medications and when to contact your transplant team.
We will provide you with learning and fun activities from our Child Life Department. Child Life Specialists will help you decide on kid-friendly and family-friendly programs to help your child recover. Your child will have access to play rooms, movie nights in our Children's Hospital Theater and a computer network with games, movies and activities.
Most children have a total hospital stay of about seven to 14 days. The stay can be longer under some circumstances. Patients who live more than one hour from Nashville will stay locally for two to eight weeks after discharge. Our social worker will help with lodging arrangements.
Long-Term Liver Transplant Follow-Up
Our relationship does not end after surgery. Children receiving a liver transplant will receive follow-up care at a transplant center throughout their lifetime. This is the key to a healthy life with a transplant.
Monitoring at Children's Hospital includes blood tests and visits to our clinic on the 10th floor of Doctors' Office Tower. These visits will take place twice weekly immediately after discharge, and then taper to weekly. We will then move to monthly appointments as your child stabilizes on the medication regimen. Our transplant nurse practitioner and transplant coordinator will help you and your child track your medications, follow-up labs and appointments.
Because the risk of infection and rejection are highest in the first six months after transplant, it is crucial to keep your follow-up appointments as scheduled. Even with the correct medications, children can experience an episode of rejection, when the body reacts against the new organ. Taking stronger immunosuppressive medicines for a short time will usually reverse rejection episodes.
Most children are sent home with at least seven different medications. Children take steroids following a liver transplant, but our program works to taper to a steroid-free protocol. Lower-risk children can taper in as little as three months, whereas children with higher risk may take longer. The transplant team will follow your child’s medication regimen closely to determine the best schedule.
The long-term plan is for children to take only two medications, one to prevent rejection and one to prevent infection. Long-term follow-up care includes an annual clinic visit, lab work and diagnostic testing.
With teamwork and a commitment to their care plan, children with transplants can thrive throughout childhood and live long and healthy adult lives.