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Pediatric Liver

Frequently Asked Questions

How do I make an appointment for my child to schedule an evaluation? 
Who will see my child during the evaluation? 
What does an evaluation consist of? 
What does being listed for transplant mean? 
How long will my child have to wait for a liver and what should we do while waiting? 
What are my child's options for transplantation? 
What are the advantages and disadvantages of living donor transplantation? 
What happens when my child gets an offer for an organ? 
How long will the transplant take? 
What are the risks of transplant surgery? 
What happens immediately after my child's transplant? 
What medications will my child take at home after transplant? 
How often will my child have to come back to the hospital for clinic visits and laboratory tests after the transplant? 
Will my child be able to return to school after transplant? 
What is the long term survival of children following liver transplantation? 

How do I make an appointment for my child to schedule an evaluation?

You as the parent may make the phone call for an appointment or it may be done by your child's primary care doctor. Our contact phone numbers are 504-988-5344 or 1-888-988-5344. Be sure to send all relevant laboratory, endoscopic, biopsy/pathology and radiology (x-ray) studies to us here in the Transplant Department prior to your child's appointment date. Please send this information to:

Tulane Abdominal Transplant
Division of Pediatric Liver and Intestine Transplantation
1415 Tulane Ave. (TW-35)
New Orleans, LA 70112

Fax: (504) 988-7601

Who will see my child during the evaluation?

Your child will be seen by a team of people specializing in liver transplantation. The team members are:

• A transplant surgeon with special training in pediatric liver transplantation
• A pediatric transplant hepatologist/gastroenterologist
• A pediatric transplant nurse coordinator
• A transplant social worker
• A financial coordinator
• A transplant dietitian
• A child psychologist
• Your primary care physician (if they are a Tulane physician)

Your child’s transplant nurse coordinator will be in frequent communication with you and your doctors and will facilitate communication between you and all other members of the team. If you have a question and you don’t know who to call, call the nurse coordinator and she will be happy to assist you.

What does an evaluation consist of?

Your child’s evaluation will begin with a thorough history and physical examination and a review of your child’s medical records by a pediatric gastroenterologist specializing in transplantation, as well as a transplant surgeon. You will have the opportunity to have any medical questions you might have answered at this time. If your child is found to be a good candidate for a liver transplant, you and your child will also meet with a nurse coordinator, a social worker and a transplant financial coordinator. They will discuss all of your practical and financial concerns with you. Depending on your child’s situation, you may also meet with a transplant nutritionist as well as other pediatric sub-specialists such as a pediatric cardiologist or pediatric infectious disease expert.

Laboratory testing (blood tests) will be done to evaluate the liver function and infectious disease exposure. Radiology (x-ray) studies may include an abdominal ultrasound and CT scan of the abdomen. In some cases, the transplant doctors will recommend a liver biopsy for further evaluation of the liver and/or an endoscopy of the stomach and intestines.

Your child’s immunization records are reviewed so that all possible immunizations can be given prior to transplantation. Following transplantation, some vaccines cannot be given and others can be given but are not as effective as they would be normally.

The transplant evaluation will generally be an overnight stay in the hospital (23 hours) so that you are not inconvenienced with travel arrangements or hotel costs.

Following completion of the evaluation and the testing, your child’s information will be reviewed by the Transplant Selection Committee, consisting of all team members, and a final decision regarding whether to list your child for a transplant is made.

What does being listed for transplant mean?

If your child’s transplant is approved by the Transplant Selection Committee, your child’s name is placed on the National United Network of Organ Sharing (UNOS) waiting list. UNOS is an organization contracted by the federal government to direct organ allocation in the United States.

UNOS makes the rules that determine the order in which people get organs. They try to ensure that organs are allocated as fairly as possible and that all transplant centers follow the same rules. Your child will receive a score, known as the PELD score, based on their height, weight and laboratory values that reflect their liver function. This score is used to determine how quickly your child will get a liver; the sickest children receive a liver the quickest. If you have any questions about the PELD score, your child’s transplant nurse coordinator can further explain this process.

How long will my child have to wait for a liver and what should we do while waiting?

The waiting time will vary depending on how sick your child is and what his or her blood type is. Overall, the waiting time can be from days to months. While waiting, try to keep your child as healthy and active as possible. Allow him or her to participate in school and all his or her usual activities. It is important that your child’s nutrition be as good as possible prior to transplant. If you have any questions regarding his/her diet, we would be happy to arrange for a consultation with our transplant dietitian. Keep your contact information up to date with the nurse coordinators. Provide a back up phone number (cell phone) for contact and always keep the cell phone charged. Arrangements should be made for care of other children that may be in the home at the time of transplant.

What are my child’s options for transplantation?

There are three main types of liver transplant: whole liver, split liver and living related. For the whole liver transplant, your child receives a whole liver from a deceased donor. For split-liver transplants, a whole deceased donor liver is divided into two parts. A child receives one-third of the liver (the left lateral segment), and an adult or large child receives the remaining two-thirds of the liver. This technique enables one person’s liver to save two people’s lives. For living related transplants, a relative of the donor with a compatible blood type donates a third of their liver (the left lateral segment) to a child. Fortunately, the liver of both the child and the donor are able to grow back to full size. Living related donor transplants have already saved many lives because the number of people awaiting liver transplant is far greater than the number of deceased donor livers available.

What are the advantages and disadvantages of living donor transplantation?

The advantage of living related donor transplants is that they can be scheduled electively before your child becomes too ill. There is less damage to liver tissue obtained from a living person than from a dead person.

The disadvantage of living related donor transplants is that there is a very small risk of death to the donor. The long-term risks to the donor have not been assessed. The transplant doctors would be happy to discuss with you any questions you may have about living donation at the time of your child's transplant evaluation.

An optimal donor for living related transplantation is someone who is the same size or larger than the child, has the same blood type, is not overweight and does not abuse tobacco, alcohol or other drugs.

What happens when my child gets an offer for an organ?

When a potential organ becomes available for your child, the nurse transplant coordinator will gather all of the pertinent information about the age, size and medical condition of the donor and give this information to the transplant surgeon on call. The surgeon then determines if the organ is a good match for your child. If it is a good match and your child is not too ill to transplant at the time of the offer, you will be contacted and asked to bring your child to Tulane Medical Center immediately. It is essential that we have accurate telephone or pager numbers to be able to reach you 24 hours a day, 7 days a week, should an organ become available for your child. It is also essential that you be prepared to travel to Tulane no matter what time of day or night.

Sometimes your child will receive a "back-up" offer. This means that your child is second in line for an organ that has become available. If the person ahead of your child on the list is unable to accept the transplant liver, it will then be available for your child.

Upon arrival to Tulane Medical Center, your child is admitted to the pediatric unit (6th floor). He or she will be seen by the pediatric residents on call, transplant surgery resident, transplant surgeon, and anesthesiologist. Some laboratory tests will be drawn. Your child will not be able to eat or drink anything in preparation for the operation.

How long will the transplant take?

A typical liver transplant can last from 6-12 hours. Be prepared for a long wait.

For a living related donor transplant, the surgery for the donor lasts approximately 5-6 hours and the surgery for the recipient takes approximately 8-10 hours.

What are the risks of transplant surgery?

There are risks associated with transplant surgery just as there are with any type of major surgery with anesthesia. Some immediate complications can include bleeding and blood clotting problems, respiratory problems and malfunction of the donor organ. Longer term complications include rejection (when your child's white blood cells attack the new liver) and infection. Fortunately, most of these complications are treatable but occasionally there is a need for a second transplant. Risks and complications will be discussed with you by both the surgeon and the anesthesiologist prior to transplant. In general, however, your child's chances of developing a complication during transplant will depend on his or her overall state of health prior to the transplant. The healthier your child is prior to transplant, the less likelihood there will be of developing a complication. At Tulane, we are fortunate to have outstanding transplant surgeons whose complication rates are lower than the national average and whose patient survival rates are higher than the national average.

What happens immediately after my child's transplant?

After your child's surgery, he or she will be taken to the Pediatric Intensive Care Unit where he or she will stay for several days. There he or she will be given medicines to prevent pain, infection and rejection of the new liver. The blood supply to the new liver will be monitored by ultrasound. The Intensive Care specialists will determine how long your child will need the aid of a ventilator to breathe.

After your child is transferred out of intensive care to the pediatric floor, the length of his stay will depend on how quickly he or she recovers and on whether or not he or she experiences any complications. A child who has had an uncomplicated liver transplant is sometimes able to go home two weeks after the transplant.

What medications will my child take at home after transplant?

Your child will take three major types of medications after transplant: drugs to prevent his or her white blood cells from rejecting (attacking) the new liver, drugs to prevent infection and drugs to treat the side effects of the anti-rejection drugs. It is important that you keep an updated and accurate list of your child's medicines with you at all times. If your child misses a dose, you need to contact your transplant nurse coordinator or physician immediately.

How often will my child have to come back to the hospital for clinic visits and laboratory tests after the transplant?

During the first three to six months after transplant, your child will need to have blood drawn once or twice a week and will need to be followed closely in the abdominal transplant clinic. Clinic visits are scheduled once a week or once every two weeks in the beginning. After one year, however, if your child is well, clinic visits and laboratory testing becomes much less frequent occurring once a month to once every six months.

Will my child be able to return to school after transplant?

Your child will be able to return to school soon after coming home from the hospital provided he or she has no serious complications. He or she will be at slightly increased risk of contracting common childhood infections but there is no need to keep them isolated from other children. If your child is not immune to varicella, however, and he or she is exposed to a child with chickenpox, you must notify your physician immediately and your child will receive special treatment to prevent infection.

What is the long term survival of children following liver transplantation?

Liver transplantation is no longer an experimental treatment of severe liver disease. Children transplanted at academic hospitals such as Tulane Medical Center have a greater than 90% chance of surviving for five years after transplant. Once a child has survived five years, he is very likely to have a normal life span, assuming he or she takes his or her medications and has regular medical care.