Liver Transplant Program

Liver Transplant FAQs

• Where can our child's new liver come from?
• How do we know our child is on the liver transplant waiting list?
• How long will our child have to wait for new liver?
• My family lives a long way from the hospital. Who can help us with travel arrangements?
• Does our child need to see his doctor while waiting for a transplant? How often?
• What about immunizations before and after transplant?
• Will insurance cover the transplant? Whom can we talk to about insurance questions?
• How will you contact us when a donor liver becomes available?
• How quickly do we need to get to the hospital when a liver becomes available?
• How long will the surgery be?
• How long will our child be in the hospital?
• How big will the incision be?
• Can our child get tattoos or body piercings after transplant?
• What restrictions will our child have during his recovery?
• What happens if our child experiences rejection symptoms?
• What kinds of long-term activity restrictions will my child have after transplant?
• Can our child have children once she is an adult?
• What's the survival rate for children with liver transplants?

Where can our child's new liver come from?

Your child's new liver can come from one of several sources.

Most transplanted livers come from deceased organ donors — called a cadaveric transplant. Organ donors are adults or children who have become critically ill or injured and have been declared brain dead. If the donor is an adult, he may have agreed to be an organ donor ahead of time. Parents or spouses can also agree to donate a relative's organs.

Your child may get a whole liver or a segment of one. If an adult liver is available and is an appropriate match for two children (or a child and an adult) on the waiting list, the donor liver can be divided into two segments, and each part transplanted (called a split liver transplant).

A living family member may also be able to donate a section of his liver — called a living-related transplant. Relatives who donate a portion of their livers can live healthy lives with the remaining segment, which will grow to original size of the whole liver. The liver is the only organ in the human body that can do this.

How do we know our child is on the transplant waiting list?

Once your child is on the transplant waiting list, the United Network for Organ Sharing (UNOS) requires Children's Hospital of Philadelphia (or the hospital treating your child) to give you a typewritten letter that details the date your child was listed and the score or status at time of listing.

How long will our child have to wait for a new liver?

Unfortunately, there's no definite answer to this question. Sometimes, children wait only a few days or weeks before receiving a donor organ, but sometimes it takes months or years. During this time, the liver transplant team will work to keep your child in the best possible health. This waiting time can be difficult, but there are quite a few things you can do to help your child — and the rest of the family — cope.

My family lives a long way from the hospital. Who can help us with travel arrangements?

Amy Sorenson, MSW, LSW, in the Hospital's Department of Social Work, can discuss travel possibilities and alternatives with you. You can reach her at 215-590-3773.

Does my child need to see her doctor while waiting for a transplant? How often?

Your child should continue to visit her primary care pediatrician for regular age-appropriate well visits and immunizations, as well as when he or she is ill. The liver transplant team will not replace your child's regular doctor.

What about immunizations before and after transplant?

Once your child has been listed for a liver transplant, it's important that he continue to receive immunizations against childhood illnesses. In some cases, especially with infants, vaccinations may need to be given ahead of the regularly recommended schedule, in preparation for transplant.

Regularly scheduled immunizations — including "live" vaccines, such as varicella (chickenpox) and measles, mumps and rubella (MMR) — will continue after your child's transplant. We'll work with you to determine the most appropriate time to give your child live vaccines, as the schedule will require modification.

The liver transplant team will be happy to work with your primary care pediatrician to make sure your child gets the shots he needs to stay healthy before, during and after transplant. Should your child be exposed to any of the childhood diseases for which he hasn't been vaccinated, please contact the transplant coordinator.

For more information about vaccines, please visit the Vaccine Education Center.

Will insurance cover the transplant? How can we get answers about insurance questions?

Organ transplant coverage varies considerably by insurance carrier and plan. Children are generally also eligible for Medicaid coverage to supplement existing coverage.

If you have insurance questions or are having difficulty getting an insurance issue resolved, Children's Hospital can help. Please call Amy Sorenson, MSW, LSW, in the Hospital's Department of Social Work, at 215-590-3773.

How will you contact us when a donor liver becomes available?

You will be asked to provide us with contact phone numbers including home, work, cell phones, nearby relatives or neighbors. In addition, if necessary you will be provided with a beeper. If the coordinator can't reach you, the liver may have to go to the next potential recipient.

If you go out of town or change your address, be sure to leave contact information with your transplant coordinator.

How quickly do we need to get to the hospital after a liver becomes available?

When you are contacted, you will get specific instructions regarding time of arrival.

How long will the surgery be?

The surgery usually lasts 4-8 hours, but this can vary considerably based on the child's size, whether or not they have had prior surgery, and other factors. Throughout the surgery, an operating room nurse or other member of the transplant team will update you regularly — at least once an hour — on the surgery's progress.

How long will our child be in the hospital?

The average length of stay following transplant is approximately 10 days for otherwise healthy older children, and 2-3 weeks for infants.

How big will the incision be?

Your child's incision will extend from the far right to just across the midline of the belly, in a curved line above the navel (along the underside of the rib cage). While it will be noticeable at first, it will fade over time.

View an illustration of the incision.

Can our child get tattoos or body piercings after transplant?

Tattoos and body piercings are discouraged due to the risk of transmission of hepatitis virus.

What restrictions will my child have during her recovery?

For the first six weeks after surgery, your child should avoid heavy lifting, abdominal exercises and vigorous exercise.

What happens if my child experiences rejection symptoms?

It's important that you know the symptoms of rejection and watch your child closely for them. And because the first sign of a rejection episode may show up in the regular tests your child will undergo (and not necessarily with any outward signs and symptoms) it's also important that you ensure he gets to all his follow-up appointments.

Remember, many children experience at least one rejection episode following a transplant. Rejection only means that the transplant team needs to fine-tune the immunosuppressant medications your child is taking to prevent his immune system from trying to reject the liver. When a rejection episode occurs, your child's doctor may prescribe a short-term steroid treatment, then adjust the dose of antirejection medications.

What kinds of long-term activity restrictions will my child have after transplant?

Most children who receive a liver transplant are able to live a normal life, with no restrictions. They attend school and participate in sports and other age-appropriate activities. In fact, after transplant, children may find they can do more than they could before transplant, when they were feeling ill. While you may be concerned about your child's health, it's important to remember that your child is a normal child who should be given the opportunity to do all the things other children do. The only difference is that your child must continue to take antirejection medications as directed.

If you have questions about what your child's life will be like after transplant, both now and when she becomes an adult, don't hesitate to ask.

Can my child have children once she is an adult?

Yes. Liver transplant recipients appear to have normal fertility and many children have been born to both male and female recipients. Women contemplating pregnancy should visit an ob-gyn doctor prior to conception, or as soon as possible afterward. It is very important to continue antirejection medications during pregnancy, as rejection is difficult to treat in pregnancy and is dangerous for both the mother and child.

If your child was a Children's Hospital patient, her care will be transferred to The Hospital of the University of Pennsylvania (HUP) in adulthood. HUP has a program for adult transplant recipients who are or wish to become pregnant.

What's the survival rate for children with liver transplants?

According to the United Network for Organ Sharing (UNOS), the one-year pediatric liver transplant patient survival rate in 2002 - 2003 was 95 percent. The graft (transplanted organ) survival rate was 86 percent.

Survival rates vary from hospital to hospital around the country. At Children's Hospital, we're proud that our graft (transplant) survival rates meet or exceed national averages. You can find more information about specific medical centers by visiting the UNOS Web site.

Reviewed by: Elizabeth B. Rand, MD
Date: September 2009