Liver Transplantation In-Depth

LIke ThisLIke ThisLIke ThisLIke ThisLIke This

Contact the Liver Transplant Program

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.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944