Your child's new liver can come from one of several sources.
Most transplanted livers come from deceased organ donors. 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). If an infant or child receives a split liver, the liver segment will be the right size for the recipient even if it is only part of an adult sized liver.
A living family member or loved one may also be able to donate a section of his liver — called a living-donor transplant. Those 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 vital organ in the human body that can do this.
Once your child is on the liver transplant waiting list, the United Network for Organ Sharing (UNOS) requires The Children's Hospital of Philadelphia (or the hospital treating your child) to provide you withe written notification, usually a letter, that details the date your child was listed and the score or status at time of listing.
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 pediatric 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.
Jo Ann Sonis, LCSW, DCSW, the Liver Transplant Social Worker, can discuss travel possibilities and alternatives with you. You can reach her at 215-590-2238.
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 pediatric liver transplant team will not replace your child's regular doctor.
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 liver transplant.
Regularly scheduled immunizations — including "live" vaccines, such as varicella (chickenpox) and measles, mumps and rubella (MMR) — will continue after your child's liver 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 pediatric 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.
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, CHOP can help. Please call Jo Ann Sonis, LCSW, DCSW, the Liver Transplant Social Worker at 215-590-2238.
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 liver transplant coordinator.
When you are contacted, you will get specific instructions regarding time of arrival, and you will have ample time to reach the hospital safely
The surgery usually lasts four to eight 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 — generally at least once an hour — on the surgery's progress.
The average length of stay following transplant is approximately 10 days for otherwise healthy older children, and two to three weeks for infants.
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.
Tattoos and body piercings are discouraged due to the risk of transmission of hepatitis virus.
For the first six weeks after surgery, your child should avoid heavy lifting, abdominal exercises and vigorous exercise.
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 liver 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.
Most children who receive a liver transplant have no restrictions. They attend school and participate in sports and other age-appropriate activities. In fact, after liver 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 liver transplant, both now and when she becomes an adult, don't hesitate to ask.
Yes. Liver transplant recipients appear to have normal fertility and many children have been born to both male and female recipients. If your child had a genetic disease this may impact fertility and may be passed on to children. This should be discussed prior to pregnancy. 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 CHOP patient, her care will be transferred to The Hospital of the University of Pennsylvania (HUP) or an adult medical center of her choice in adulthood. HUP has a program for adult transplant recipients who are or wish to become pregnant.
According to the Scientific Registry of Transplant Recipients, the one-year pediatric liver transplant patient survival rate in 2002 - 2003 was 95 percent. The graft (transplanted organ) survival rate for patients transplanted in 2009-2011 at CHOP was 97.25 percent. The graft (transplanted organ) survival rate was 94.59 percent.
Survival rates vary from hospital to hospital around the country. At The Children's Hospital of Philadelphia, 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 www.srtr.org.
Reviewed by: Elizabeth B. Rand, MD
Date: November 2012