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Where can a child's new liver come from?

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

Few 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 stem dead.

The 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.

How does one get on the state waiting list?

You first decide on the hospital you wish to get the transplant and then ask your coordinator to put you on the wait list after giving a onetime fee through a DD of Rs. 1000/- in favour of “Transplant Authority of Tamil Nadu”. You will then be registered and be given your wait list number by the Hospital. Registration in Government Hospitals are done free of cost.

How will I get a liver on the wait list?

When there is a brain stem dead person in any of the participating hospitals, whose organs are donated, the organs are allocated to persons in the wait list. If your name comes up on the list as per the wait list number, your coordinator will inform you about the possibility and you will be called to the hospital for the transplant.

How does the waiting list work?

The TRANSTAN office manages the liver transplant waiting list. A patient who wants a deceased donor liver is evaluated by his hospital. If a patient is healthy enough for a transplant, his/her details are added to the list, after a onetime fee of Rs. 1000/- is sent as a DD to the TRANSTAN office. In case you register with a government hospital then you need not pay this amount.

When a donor becomes available, the hospital is notified of the blood group of the donor and his liver status and if the blood group matches with the donor’s and if the recipient is the next in line as per the waiting list, the hospital alerts the patient and if the patient qualifies for the transplant then the liver is allocated to the patient.

How long will a 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 paediatric liver transplant team will work to keep the child in the best possible health. This waiting time can be difficult, but there are quite a few things one can do to help the child and the rest of the family cope.

Does the child need to see his/her primary care doctor while waiting for a liver transplant? How often?

The child should continue to visit the primary care paediatrician for regular age-appropriate well visits and immunizations, as well as when he or she is ill in close association with the paediatric liver transplant team.

What about immunizations before and after liver transplant?

Once the 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.

Live vaccines such as MMR cannot be given for about 2 years after transplant. The transplant team will work with the parents to determine the most appropriate time to give the child live vaccines, as the schedule will require modification.

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

Who pays for the costs of transplant and other medications?

For patients undergoing transplant in Govt hospitals, the government arranges for the medication of the patient and the transplantation is done free of cost. In case of private hospitals the patients, will need to arrange the funds by themselves. The costs of transplant and the medications after are generally high.

How will the hospital contact the family when a donor liver becomes available?

The family will be asked to provide the hospital with contact phone numbers including home, work, cell phones, nearby relatives or neighbours. If the coordinator can't reach the family, the liver may have to go to the next potential recipient.

If the family goes out of town or changes the address, be sure to leave contact information with the liver transplant coordinator.

How quickly does one need to get to the hospital after a liver becomes available?

When contacted, the family will get specific instructions regarding time of arrival, and will have ample time to reach the hospital safely.

How long will the surgery be?

The surgery usually lasts eight to ten 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 on the surgery's progress.

How long will the child be in the hospital?

The average length of stay following transplant is approximately two to three weeks.

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.

Can the child get tattoos or body piercings after liver transplant?

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

What restrictions will the child have during her recovery?

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

What happens if my child experiences rejection symptoms?

It's important that the family knows the symptoms of rejection and watch the child closely for them. And because the first sign of a rejection episode may show up in the regular tests the child will undergo (and not necessarily with any outward signs and symptoms) it's also important that it is ensured that all his follow-up appointments are kept.

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 the child is taking to prevent his immune system from trying to reject the liver. When a rejection episode occurs, the child's doctor may prescribe a short-term steroid treatment, and then adjust the dose of anti-rejection medications Rejection is the body's normal reaction to something foreign. When a new liver is placed in a person's body, the body sees the transplanted organ as a threat and tries to attack it. To allow the transplanted liver to successfully live in the body, the child must take anti-rejection medications to trick the immune system into ignoring the transplanted organ. He/ She will need to take these medications for the rest of his/ her life. Rejection is fairly common, with approximately 40 percent of children experiencing some signs within the first two weeks of surgery. A liver biopsy may be necessary to make the diagnosis. Rejection is treated by adjusting medication doses and does not generally seriously injure the liver in this setting.

Rejection can occur anytime days, months or even years after transplant. While the word "rejection" sounds alarming, it's important to remember that rejection is treatable. A rejection episode doesn't mean the child will need another transplant.

Here are some of the symptoms of rejection:
  • Fever
  • Jaundice (yellow skin and eyes)
  • Changes in stool or urine colour
  • Changes in blood work results

If the child experiences any of these symptoms, please call the liver transplant coordinator or the transplant office immediately. This physician will gather all your information and relay it to the paediatric liver transplant team.)

Some or none of these symptoms may occur during a rejection episode. In fact, often, changes in laboratory tests results such as an increase in liver enzymes are the only signs of a rejection episode. That's why it's important to keep all scheduled transplant clinic and lab work appointments after the child is discharged from the hospital.

If the child’s doctor suspects that the child is experiencing rejection, he may order a liver biopsy. The biopsy confirms rejection and allows the physicians to see how much of the child's liver has been affected.

If the child does have a rejection episode, he or she may need to be hospitalized for a few days while medications are adjusted.

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

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 the parents may be concerned about the child's health, it's important to remember that the child is a normal child who should be given the opportunity to do all the things other children do. The only difference is that the child must continue to take anti-rejection medications as directed.

If you have questions about what your child's life will be like after liver transplant, both now and when he/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. If they 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 anti-rejection medications during pregnancy, as rejection is difficult to treat in pregnancy and is dangerous for both the mother and child.

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

Survival rates vary from hospital to hospital around the country