KidsMD Health Topics

Liver Transplantation

  • "Of all the organs that can be transplanted, the liver is the most tolerant of rejection. This means that liver transplant patients can often get by with low levels of immunosuppressive medication, and avoid some of the risks associated with them."

    Maureen Jonas, MD, medical director, Liver Transplant Program

    If your child’s liver disease is no longer responding to treatment, or your child has acute liver failure, a liver transplant may be an option to give him a longer and healthier life. A liver transplant is an operation performed to replace a diseased liver with a healthy liver or segment of a healthy liver.

    • The liver may come from an organ donor who has died, or from a family member who is willing to donate a part of his or her liver and is a suitable candidate.
       
    • In some cases, it’s done in combination with other organ transplants, such as intestines or kidneys.
    • First year survival rates for children who have been treated by our Liver Transplant Program are excellent. Click here to watch a video about liver transplantation here at Boston Children’s. 
       

    Click here to watch a video about liver transplantation here at Boston Children’s.

    How Boston Children's Hospital approaches a liver transplant

    Our Liver Transplant Program evaluates infants, children and adolescents with end-stage liver disease who may be candidates for transplants, and we care for them before and after the transplant. We work closely with Boston Children’s Center for Childhood Liver Disease.

    Whether your child needs a whole organ transplant, reduced-size liver transplant, split liver transplant or living donor transplant, he is in good hands with us. Your child’s team includes:

    • Pediatric liver transplant surgeons
    • Hepatologists and other gastroenterologists
    • Advanced practice nurses
    • Transplant coordinators
    • Transplant anesthesiologists
    • Transplant pharmacists
    • Dietitians
    • Transplant infectious disease specialists
    • Transplant psychologists
    • Transplant social workers
    • General radiologists and interventional radiologists

    We also bring in experts from additional sub-specialties throughout Boston Children's to join your child’s care team as needed, including Child Life specialists, physical therapists and resource specialists to support your whole family.

    To speak with a member of our Liver Transplant Team, please call:  617-35-LIVER.

    Helping your child with medical experiences: a practical parent guide

    Download a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide” (please note that Adobe Acrobat is required) and read about topics including:

    • Talking to your child about his condition
    • Preparing for surgery and hospitalization
    • Supporting siblings
    • Taking care of yourself during your child’s illness
    • Adjusting to life after treatment

    Liver transplant: Reviewed by Maureen Jonas, MD
    © Boston Children's Hospital, 2010

     

    Contact Us

    Liver Transplant Program
    Boston Children's Hospital
    300 Longwood Avenue
    Fegan 3
    Boston MA 02115 

    617-35-LIVER

  • We understand that you may have a lot of questions when your child might need a liver transplant.

    • How does it work?
    • How long will my child need to be hospitalized?
    • How will it affect my child long-term?
    • What do we do next?

    We’ve tried to provide some answers to those questions here, and when you meet with our experts, we can explain your child’s options fully.

    Did you know?

    If a person donates part of his liver, it will grow back to its original size in just a few weeks after the donation. And your child’s new liver will grow to an appropriate size, and continue to grow normally as she grows into adulthood.

    Who gets liver transplants?

    The most common condition that necessitates a liver transplant in children is biliary atresia. Other conditions that may require a liver transplant include:

    To speak with a member of our Liver Transplant Team, please call:  617-35-LIVER.

    How can I tell if my child is experiencing an episode of rejection?

    It’s not always easy; most times, you will see no signs, and rejection will be found by routine monitoring of your child’s blood tests.

    Some of the most common signs include:

    • Dark urine
    • Jaundice (yellow skin or eyes)
    • Significant itching

    Your child’s transplant team will watch for these signs and show you what to look for.

    What medications are used to prevent rejection? 

    Your child’s transplant pharmacist will work closely with the rest of the transplant team to determine the best medications for your child. Some of the most common ones are: 

    • Tacrolimus (Prograf)
    • Prednisone
    • Mycophenolate mofetil (CellCept)

    These medications work by suppressing the immune system, but that means that your child will be at higher risk for infections. Our team will continually monitor his health through blood tests and other exams, and the dosages may change frequently.

    What infections will my child be susceptible to?

    Some other infections your child may be especially susceptible to include:

    • Oral yeast infections (thrush)
    • Respiratory viruses
    • Cytomegalovirus (CMV)
    • Epstein Barr Virus (EBV)

    This risk of infections is especially high during the first few months after a transplant. This is because higher doses of anti-rejection medicines are given, so the immune system is especially suppressed.

    To speak with a member of our Liver Transplant Team, please call:  617-35-LIVER.

    Long-term outlook

    What’s the long-term outlook for my child?

    Every child and every transplant is different, so it’s hard to make a general statement about long-term outlook. The large majority of children who have had liver transplants survive the first year, and most of them live into adulthood. Your child’s doctors will explain the risks and expectations for your child when he is placed on the waiting list for a transplant.

    Long-term immunosuppression carries risks—not only from increased susceptibility to infection, but also from the effects of the immunosuppressive medicines. Still, with appropriate medical follow-up, most children go to school, participate in sports, work in all types of jobs and professions, have healthy children and generally lead full and happy lives.

    Results continually improve as researchers at Boston Children’s and elsewhere learn more about how the body deals with transplanted organs and search for ways to improve the success of transplants.

    Finding a donor liver for your child

    Where do transplanted livers come from?

    Transplanted livers can come from two places:

    • Deceased organ donors- adults or children who have died, often because of an accidental injury or other cause that does not affect the vital organs. A donor may be anywhere in the United States.  Depending on the size of a deceased donor, your child may get the whole liver or part of the liver (segmental graft.)
    • Living donor (called a living-related transplant). A living family member with a compatible blood type and anatomy who chooses to donate a part of his or her liver. Since our livers can regenerate, the donor's partial liver will grow back in time.

    Sometimes when an adult liver becomes available and is an appropriate match for two children (or an adult and a child) on the waiting list, the donor liver can be divided into two parts and each part is transplanted.

    Is it better to receive a whole liver than a partial liver? 

    No, children who receive a partial liver transplant do just as well as those who receive a whole liver.

    Who distributes the donor organs?

    The United Network for Organ Sharing (UNOS) is responsible for transplant organ distribution in the United States. They oversee the distribution of most types of solid organ transplants. In addition to livers, they allocate hearts, kidneys, pancreas, lungs, intestines and corneas.

    How are donor organs distributed?

    UNOS keeps a list of all the people in the United States who need solid organ transplants. If your child needs a liver transplant, he will be given an allocation score based on how severe his condition is and how urgently he needs the transplant.

    Those who would benefit most are given higher scores, and are given first priority when donor organs become available.

    When a donor liver becomes available:

    • A computer searches all the people on the waiting list and creates a smaller list of people for whom the liver would be the appropriate size and blood type.
    • The computer ranks the people on that smaller list according to their allocation scores.
    • The person at the top is considered first for the transplant. If he is not a good candidate, the next person on the list is considered, and so forth.

    When the decision is made to put your child on the transplant list, we will send her medical profile to UNOS, and keep them updated them as her condition changes.

    How long is the wait?

    We know that it’s agonizing to wait for a donor organ, but, unfortunately, there’s no definite answer to this question. Your child may be on the list for weeks or months, or it may take longer. We will collect all of your contact information and, if necessary, you will be given a beeper for us to be able to reach you at all times.

    What happens while we wait?

    We recommend that you use your waiting time to prepare for your child's surgery. A donor liver can become available at any time, day or night, and it is crucial to plan ahead for when this occurs. Here are some things to keep in mind:

    • It’s important that you always leave a number where you can be reached if you’re away from home so our transplant team can reach you at all times.
    • When a liver becomes available, you’ll need to get to Boston Children’s within two to four hours. Keep your packed hospital bag handy—including an extra 24-hour supply of your child’s medications—and arrange transportation to the center in advance. We can help with this if you come from a long distance away.
    • If you’re organizing your own transportation on the day of surgery, plan ahead in case of inclement weather, distance and rush-hour traffic. 
    • If you live far from Boston Children’s and can’t get to the hospital within two to four hours of our call, you may need to stay closer to the hospital.
    • Plan well in advance for other factors including:
      • Baby-sitting/child care for your other children
      • An alternative transportation plan in case the person driving you is unavailable
      • Phone calls to family members - we suggest you call one family member so they in turn can contact other family members.
      • Packing a bag for the hospital stay. This may include toiletries, pajamas and personal items (pictures, favorite blanket, stuffed animal).

    Waiting for an available donor liver is often the most stressful time for our patients and their families. Please remember that we are always here to offer you support and resources should you need them.

    How will I be notified when a donor liver is available? 

    When a liver that seems to be a good match for your child becomes available, we will notify you by phone or pager. You’ll be asked to come to the hospital immediately.

    When you receive the call to come to the hospital, be prepared to:

    • Ask about any medications your child should take before coming to the hospital
    • Let us know if your child has a fever or is currently sick
    • Not allow your child to eat or drink anything after receiving the call
    • Leave your house as soon as possible

    Keep in mind that it is possible that you may be sent back home if one or both of the following things occur: 

    • The team discovers a problem with the new liver
    • The team finds that your child has a condition that could jeopardize his health or the transplant’s chance of success

    To speak with a member of our Liver Transplant Team, please call:  617-35-LIVER.

  • If it seems like a liver transplant might be an option for your child, we’ll ask you to come to the hospital for an informational visit. Your family will meet our transplant team, and you’ll be invited to ask questions and share any concerns you may have. We encourage you to bring family members to this meeting.

    If you and the transplant team agree that a liver transplant is an appropriate option, your child will be scheduled for an evaluation. This is necessary so that we can:

    • Confirm that a transplant is the best treatment
    • Determine how urgent the need for a transplant is
    • Make sure that the donor organ your child receives will be a good match

    The evaluation is usually completed in two days in the outpatient department.

    Who will we meet with during the transplant evaluation?

    A transplant is a complex procedure that involves many medical specialties, so your family will meet Boston Children’s Hospital experts from a number of different areas, including:

    • Liver transplant surgery: These are the doctors who specialize in liver transplant surgery and will perform the transplant.
    • Hepatology: The hepatologist is a physician who specializes in the medical evaluation and treatment of liver disease. All of the hepatologists at Boston Children’s are board certified in Pediatric Transplant Hepatology.
    • Transplant nurse coordinator: This is a nurse who specializes in caring for patients who have undergone a liver transplant and will organize all aspects of your child’s care before and after the transplant. 
    • Anesthesia: The anesthesiologist will review your child's medical and/or surgical histories, identify any risk factors associated with anesthesia and plan the type of anesthesia that will be specifically tailored to your child.
    • Infectious disease: Our infectious disease specialist will perform a physical exam and review your child's vaccination records. We will want to know if your child has any particular environmental exposures or has recently traveled to a foreign country. 
    • Psychiatry: A psychiatrist or psychologist will meet with you and your child to discuss coping strategies, stress management and family life. 
    • Social services: Our transplant social worker will meet with you and your family to identify support systems and discuss your feelings about transplant. We can provide you with information about resources related to finances, transportation, relocation expenses and support groups.
    • Nutrition: Our registered dietician will evaluate your child's diet and nutritional requirements. It’s important that your child maintain a healthy lifestyle and good nutrition before the transplant. 
    • Physical therapy: The physical therapist will discuss the importance of exercising before transplant in a way that is appropriate for your child. The goal of developing an exercise plan is to help increase endurance and strength. 
    • Dentist: Before a transplant can be considered, we often recommend that your child meet with his own dentist or one here at the hospital. The goal is to treat any cavities, infections or tooth abscesses before the operation, since these conditions can be problematic once your child begins to take medicine to suppress his immune system.

    If your child has any other medical problems such as a lung condition (e.g. asthma or cystic fibrosis) or heart disease, other specialists may be included to fully assess your child’s
     

    What tests are used during the evaluation?

    Your child’s specialists will order different tests to rule out infections, determine functionality of organs and make sure a donor match is compatible. These types of tests may include:

    1. Blood

    • Blood type (donor and recipient must have compatible blood)
    • Blood tests that measure how long it takes for your child’s blood to clot (often used to check liver function)
    • Kidney function tests
    • Some tests to check for exposure to viruses, bacteria, and infections including:

    2. A skin test or other test for tuberculosis (TB) if this has not already been done by your child’s physician. In this test, a doctor or nurse injects a small amount of testing fluid just under the skin on the under side of your child’s forearm. After two or three days, the test is checked. If a certain size bump has developed, the test may be positive for TB exposure or infection.

    3. Other kinds of tests

    • Abdominal ultrasound to see the liver and flow of blood through your child’s arteries and veins
    • Sometimes a CT scan is needed to better show the anatomy of the bile ducts or the blood vessels in and around the liver

    After these consultations and tests, our transplant team will meet as a group to determine whether your child is a good candidate for a liver transplant and to determine the best time for your child to be placed on the transplant waiting list. Our multidisciplinary approach to care ensures that your child’s case will be given thoughtful discussion of every treatment possibility.

    If your child is a transplant candidate, we’ll make sure your family is fully educated about the risks and benefits, and your child will be placed on the United Network for Organ Sharing (UNOS) waiting list. You will receive notification verbally and in writing when this happens.

    To speak with a member of our Liver Transplant Team, please call:  617-35-LIVER.

  • Once a donor liver has been found, things move very quickly. You will be called and asked to bring your child to the Admitting Office then to the Transplant floor to get ready for surgery. Our team will make sure that you and your family are comfortable and informed.

    Keep in mind that it is possible that you may be sent home again if one or both of the following things occur:

    • The team discovers a problem with the donor liver.
    • The team finds that your child has a condition that could jeopardize his health or the transplant’s chance of success.

    It’s normal to be nervous, but you can rest assured that your child is in good hands with us. Your child’s surgeon has the expertise required to work with the tiny vessels and ducts found in children.

    What happens when we arrive at the hospital?

    When you arrive at the hospital, members of your the transplant team will perform a physical exam and run some tests to make sure your child is ready to go to the operating room.

    What happens in the operating room?

    Often, the anesthesiologist will allow you to take your child into the operating room and stay with him until he’s given anesthesia and falls asleep.

    Next, special catheters are inserted into your child’s blood vessels and urinary bladder. A nasogastric tube will be inserted through his nose into the stomach.

    The transplant surgeon makes an incision in your child’s upper abdomen. The diseased liver is removed through the incision, and the new liver put in its place. The surgeon reconnects the blood vessels carrying blood to and from the liver, and does a biliary reconstruction so that bile can drain from the healthy liver to your child’s intestines.

    How long will the transplant operation take?

    Each child and each transplant is different, but a liver transplant operation usually takes around four to six hours.

    Because your child needs to be prepared for anesthesia and have all of the special catheters and tubes inserted, you may not see him for a bit longer than the actual surgery itself, but you will be regularly updated as to the progress of surgery and his condition.

    What happens after surgery?

    After the surgery, your child will go to the intensive care unit (ICU) to be monitored closely. After his condition is stable, your family is welcome to visit. Read more about the ICU

    While your child is in the ICU, members of the transplant team will begin to educate you and your family on all aspects of caring for your child after his operation. This will include information about medications, activity, follow-up, diet and any other specific instructions.

    How long will my child be in the hospital?

    If all goes well, and your child is a teenager, he may stay in the hospital for 10 to 12 days. Babies may stay for anywhere from two to three weeks. A few days are spent in the ICU, and the rest in a single room in the Solid Organ Transplant Unit. During this time:

    • Your child will continue to recover, and we will be monitoring his health and adjusting his medications.
    • Your child will also be seen by his Child Life specialist and social worker to provide additional support during his stay.
    • Our team will teach you about the medicines and care your child will need at home.

    Our goal is to have you feel comfortable and confident with all aspects of care before your child goes home. The Patient Care Coordinator here at Children’s will work with you and your insurance company to set up the medications and any in-home nursing care that might be needed after discharge.

    Follow up

    After the transplant, your child’s team will want to keep a close eye on him through follow-up visits to make sure that everything is going well. These visits might include:

    • Complete physical examination, monitoring of blood pressure, growth, etc.
    • Blood tests
    • Continued education for you and your child
    • Medication changes

    How can I help keep my child safe after the transplant?

    We understand that you will want to do everything possible to protect your child and his new liver, and there are some steps you can take to minimize the risk of infection

    Coping and support

    We understand how disruptive and frightening a liver transplant can be - not only for your child, but for your whole family. From your first visit, you’ll work with a team of professionals who are committed to supporting you.

    Patient education: Our nurses are on hand to walk you through the transplant process and help answer any questions you may have. They will also reach out to you by phone, continuing the care and support you received while at Children’s.

    Parent to parent: Want to talk with someone whose child has had a liver transplant? We can often put you in touch with other families who can share their experience.

    Faith-based support: If you and your family find yourself in need of spiritual support, we can connect you with the Boston Children’s chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your treatment experience.

    Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child’s diagnosis and stress related to coping with illness and dealing with financial difficulties.

    On our For Patients and Families site, you can read all you need to know about:

    • Getting to Boston Children’s
    • Accommodations
    • Navigating the hospital experience
    • Resources that are available for your family

    To speak with a member of our Liver Transplant Team, please call:  617-35-LIVER.

  • Here at the Liver Transplant Program, our treatment is informed by our research. Boston Children’s Hospital  is home to the world’s most extensive research enterprise at a pediatric hospital.

    We also have a great number of partnerships with the top research, biotech and health care organizations in Boston, working together to improve kids’ health.

    Maureen M. Jonas, MD, medical director of the Liver Transplant Program, has led research focused on liver disease in children with emphasis on viral hepatitis. Her recent work includes investigations into the treatment of hepatitis B and C viruses in children.

    Jonas was the principal investigator in an international pediatric lamivudine trial and the multicenter trial of adefovir dipivoxil, in which the drugs, which are effective in adults with chronic hepatitis B, were tested in children. Jonas's work has been published in the New England Journal of Medicine, Hepatology, Pediatric Infectious Disease Journal and other major medical journals. Active clinical trials at this time include new treatments for hepatitis B and C in children and adolescents.

    Other research projects going on in the Center for Childhood Liver Disease include studies of ways to monitor progression of fibrosis (scarring) in the livers of children without doing repeated liver biopsies, studies of fatty liver disease, rapidly becoming the most common liver disease in children, and study of the liver disease in children with cystic fibrosis.

    The Boston Children’s Hospital Liver Transplant Program is a member of the national organization called Studies of Pediatric Liver Transplantation (SPLIT) in which data are gathered from pediatric transplants to teach us more about which children are getting transplants, when and where they are getting them and how they are doing after transplant.

    To speak with a member of our Liver Transplant Team, please call:  617-35-LIVER.

  • Caitlin's Journey

    A benign tumor in young Caitlin's liver was intercepting all the blood intended for her liver, and at the same time sending too much blood to her heart and lungs. Learn about the liver transplant that saved Caitlin's life.

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