Pediatric liver transplants can save the lives of children with end-stage liver disease.
Children and teens may benefit from a liver transplant if disease has damaged their liver or otherwise caused loss of liver function.
The liver is one of the largest organs in the body. It helps convert food into life-sustaining energy.
It’s also important for the digestion and absorption of vitamins, minerals, and even medicine. It aids the body in resisting infection.
In 1981, UPMC Children’s Hospital of Pittsburgh started the Hillman Center for Pediatric Transplantation. It was the first pediatric transplant program in the United States.
Since its founding, the program has become one of the nation’s top liver transplant centers. This is because of its volume, new treatment methods, and improved long-term quality of life.
UPMC Children’s offers many pediatric liver transplant services. These include living-donor liver transplant. It also takes a thorough approach to care before, during, and long after each procedure.
Approximately 400 children in the United States are waiting for a liver transplant. That’s according to the United Network for Organ Sharing.
For many children in need of a liver transplant, finding a living donor can speed this up. UPMC works with families to teach them about living-donor transplant. It also supports their search for a living donor.
This easy-to-follow guide offers a wide range of tips. These include navigating pediatric liver transplants, waiting lists, living-donor searches, and caring for children before and after liver transplants.
Here, we’ll answer questions like:
- How do I choose a transplant center for my child?
- How do I find a living donor for my child?
- How should my child prepare?
- Is there support for my child and I during this process?
- What are the benefits of a living-donor liver transplant?
- What happens during a pediatric liver transplant evaluation?
- What is the liver transplant waiting list?
What to Expect from a Pediatric Liver Transplant
First, your child’s doctor will refer your family to the center’s pediatric transplant program. They’ll do this before your child joins a liver transplant waiting list.
A team of specialists will then go over your child’s medical and surgical history and study their overall health. This may include checking heart, kidney, and lung function. It may also include checking their nutrition and checking for possible infectious diseases.
The purpose of this is to find out if a liver transplant is your child’s best option.
The team will include transplant surgeons, nurses, anesthesiologists, hepatologists, social workers, dietitians, and financial counselors.
You’ll want to bring as much information to this as possible. This can include medications your child is taking, up-to-date medical records, x-rays or imaging scans, and other recent test results.
This process may also involve physical exams and other tests, such as:
- Blood tests to find out how well your child’s liver is functioning. Doctors may look at liver enzyme, bilirubin, and albumin levels and perform clotting studies. Other blood tests may improve the chance of a successful transplant.
- An electrocardiogram (EKG) and echocardiogram to rule out heart conditions.
- Imaging tests such as ultrasounds or x-rays to get a better look at your child’s liver.
- A liver biopsy, in which doctors examine a small piece of liver tissue for signs of damage or disease.
Children with biliary atresia, maple syrup urine disease, genetic cholestasis, cirrhosis, tyrosinemia, and other conditions are possible liver transplant candidates.
The center’s care team will also help with support and information about the liver transplant process. They’ll also give advice about recovery so you can make an informed decision for your family.
If a liver transplant is the best option for your child, you’ll discuss their next steps. These will include finding a living donor.
The Liver Transplant Waiting List: How It Works
Approximately 400 American children are waiting for a liver transplant. That’s according to the United Network for Organ Sharing (UNOS). Approximately 10,000 Americans total are on the liver transplant waiting list.
One type of liver transplant is a deceased-donor transplant because the donated liver comes from a person who has died.
If a transplant is right for your child, they’ll join the UNOS waitlist. The organization matches donated organs with people who need them. They do this based on liver disease severity, blood type, body size, geography, age, and other factors.
To find out how severe a child’s liver disease is, doctors give those on the waiting list a score based on how soon they need a transplant. For those under 12 years old, this is a pediatric end-stage liver disease (PELD) score. For those 12 and older, this is an end-stage liver disease (MELD) score.
Those who need a transplant sooner come first. But other factors, like medical compatibility and distance from the nearest donated organ, play a role, too.
Far more Americans need a liver transplant than there are livers donated by deceased donors each year. That’s why many centers, including UPMC, consider living-donor liver transplant as a first-line treatment.
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Living Donation and Partial Liver Transplant: Life-Saving Options
UPMC Children’s offers a full range of pediatric liver transplant services. This includes living-donor liver transplant and partial liver transplants, which can save children’s lives.
They also offer children with end-stage liver disease many advantages, including shortened wait times and better long-term outcomes.
A living liver donation can shorten the time your child waits for a liver transplant. It can also increase the number of livers available for transplants.
During a living-donor liver transplant, surgeons remove 20% to 25% of the liver from a healthy adult and transplant it into a child who needs it. Within a few months, both the donor’s and recipient’s livers grow back to full size.
Any adult who meets certain criteria can become a living donor. A recipient’s relative, friend, or even a complete stranger can do this. These types of transplants can save lives by shortening wait times, speeding up recovery, and improving long-term outcomes.
UPMC experts also perform partial liver transplants. This is when an adult liver from a deceased donor goes to two children in need of a liver transplant.
Research has shown that partial liver transplant can have several benefits. These include shortened wait times on the national waiting list.
Those who come to UPMC for transplant evaluation can expect to hear about living-donor liver transplant and partial liver transplant early on.
Benefits of living donation include:
- Flexible scheduling. Living donation means you and your child’s donor can schedule surgery at a time that works for them.
- Improved long-term outcomes and quicker recovery times.
- More deceased-donor livers available for people on the transplant waiting list.
- Reduced wait times for a healthy liver and transplant. This lowers the risk that a child’s liver disease will get worse while they’re waiting for their donation.
Sometimes you, your spouse, or other family members may have the right liver to donate to your child. But this isn’t always the case. In general, a donor must also meet the following criteria:
- They can pass blood tests, chest x-rays, CT scans, tissue matching, physical exams, and psychiatric screenings to ensure they’re a good match.
- They don’t engage in drug or substance use.
- They have a body mass index (BMI) of less than or equal to 32.
- They must also have no history of:
- Liver disease, including cirrhosis and hepatitis.
- Significant diseases involving other organs such as the lungs, kidneys, and heart.
- Pulmonary hypertension.
- Active malignant cancers.
- They’re between the ages of 18 and 60.
- They’re in good physical and mental health.
Not all children will qualify for living-donor liver transplant. However, if doctors agree that your child is a good candidate, finding potential donors is your next step.
Tips for Finding a Living Donor
When a child needs a living donor, family members are often the first to volunteer. About one in four people are suitable for liver donation at UPMC Children’s.
In cases when a family member isn’t suitable, anyone who is can take their place. This can include a family member, friend, neighbor, co-worker, or stranger.
Asking someone to become your child’s living donor can feel overwhelming. But UPMC’s Living Donor Champion Program helps families handle this so they can focus on their loved one’s health.
The program connects families with information about who can become a living donor. It also suggests resources for talking to family and friends about living donation. It even helps identify strategies for finding a living donor.
The program can help a trusted loved one or friend take the lead in finding you a living donor. It does this through workshops and toolkits. Living Donor Champions share your child’s story with as many people as they can to make sure they find a good match.
Tips for finding a living donor include:
- Make a list of prospective donors. This may include family members, friends, co-workers, or acquaintances.
- Let potential donors know your child needs help by sharing your story. Share why a living-donor transplant is the best option and answer their questions about it.
- Connect with potential donors outside of your immediate network. You can do this by creating a social media page dedicated to helping you find a donor. You can also make pamphlets and business cards and take out newspaper ads.
- Remain positive in your conversations with potential donors. Keep your sense of urgency but recognize the selflessness of organ donation.
When you have a volunteer, encourage them to register as a donor. If they register with UPMC and they’re the right candidate, UPMC will contact them about next steps in a few days.
The potential donor will then go in for bloodwork, CT scans, an echocardiogram, and psychiatric and social work visits. They’ll also meet members of the transplant team.
UPMC will then assign an independent living-donor advocate to act on your donor’s behalf by:
- Answering all questions on liver donation.
- Discussing the benefits and risks of living-donor liver transplant.
- Making sure they fully understand what living liver donation means.
- Sharing concerns with the liver transplant team.
On the day before surgery, your child and their donor will meet with the transplant team to go over the surgery.
Choosing a Transplant Center for Your Child
Finding the best program for your child’s liver transplant is one of the first (and most important) decisions you’ll make.
You’ll need a good match for your child’s donor liver. But your transplant center must also fit your family’s needs and offer reliable, compassionate care.
Your child’s doctor will likely have advice for finding a pediatric liver transplant center. That said, here are some factors to consider:
Location: If your child is on the waitlist to receive a deceased-donor liver, you’ll need to stay close to the transplant center at all times. This way, they can get their surgery as soon as a liver is available.
Medical visits and tests are usually necessary before and after any organ transplant surgery. If you choose a center that’s far away, make sure it can help you with travel and where you can stay nearby.
Ask about low-cost options for this, such as Family House in Pittsburgh. Family House offers a room rate at a fraction of nearby hotel costs for those traveling there for medical care. It offers weekday breakfasts, transportation, stocked food pantries, and more.
Expertise: Research the center’s rate of success. Has the program successfully transplanted many patients with your child’s diagnosis? You want a center with a proven record of this.
Living-donor transplant: Living donation may get your child a healthy organ faster. If you think a living donation is right for your child, make sure the center offers it. Also, make sure the center has programs to make it easier for families.
Finances: Make sure the center accepts your insurance and offers financial guidance.
Support and accommodations: What on-site accommodations does the center offer families before, during, and after surgery? Will staff help guide your family in finding a living liver donor? Make sure the center you choose takes an innovative approach to medicine and a warm, thoughtful approach to family care.
Visit the Scientific Registry of Transplant Recipients (SRTR): The U.S. government uses the SRTR to gather data from every organ transplant in the country. You can search it by organ and location to learn how many deceased-donor and living-donor liver transplants each center performs per year.
You can also learn other important details. The Agency for Healthcare Research and Quality has teamed up with SRTR to create TransplantCenterSearch.org. This site allows you to customize your search to find the best fit.
After Care: Life After Liver Transplant
Living with a transplant is a lifelong process. That said, the first year after transplant is often the hardest.
Children or teens who have had liver transplants may take months to feel like themselves again.
Recovery often involves clinic visits, medication, diet changes, safety measures, and physical therapy. UPMC Children’s understands that successful recovery and care goes far beyond the hospital stay.
From the beginning, UPMC’s teams work with families to get them ready to care for their loved ones.
The team teaches families how to give medication and look for signs of infection and transplant rejection. They also help create a schedule to meet your child’s unique needs and make sure necessary follow-up visits are on the books. This is all before the child leaves the hospital.
Here are some tips for getting your child the best possible outcome:
- Activity: Seek advice from your child’s clinical team when integrating back into their daily routine, especially physical activity.
- Appointments: Make sure your child goes to their follow-up visits, physical therapy, and mental health appointments.
- Ask your care team for tips on avoiding infection after a liver transplant. You should also learn about which vaccines are still safe after a transplant and which aren’t.
- Diet: Give your child healthy meals and snacks and make sure they meet their specific dietary needs.
- Know the signs of liver rejection. These can include jaundice, dark urine, itching, abdominal swelling or tenderness, fatigue, and irritability.
- Medication: Make sure they take the right doses at the right times each day. These may include anti-rejection medications and those that fight infection. Both are important to your child’s recovery.
- Rest: Your child will need to take it easy during their recovery. Make sure they get plenty of rest.
- Support: Encourage them and entertain them at home.
Pediatric Liver Transplant Frequently Asked Questions
What is a pediatric liver transplant?
A liver transplant is surgery that replaces a diseased liver or a liver that doesn’t work. The new liver is a healthy one that another person has donated. There’s more than one type of liver transplant.
Types include deceased-donor transplants, partial liver transplants, and living-donor transplants. Children who have severe liver disease and can’t live without a transplant need them most.
Where will the donated liver come from?
For a living-donor liver transplant, an adult relative, friend, or stranger who meets certain criteria can choose to donate a piece of their liver. In a successful living donor transplant, the liver fully grows back in both the donor and the person who gets the donation. This happens within about three months of surgery.
How does the liver transplant waiting list work?
In the U.S., the United Network for Organ Sharing (UNOS) handles how organs reach those who need them. UNOS gets data from hospitals and medical centers about the adults and children who need them.
When UNOS gets this data from local hospitals, these adults and children join a waiting list. They also get a “status” code for how urgently they need a transplant. When an organ becomes available, a computer searches everyone on the waiting list for a liver. It also sets aside those who aren’t good matches for it.
Then, it makes a new list from the remaining candidates. The person at the top of the list gets the strongest consideration for the transplant.
In the case of living donation, people still need to join the waiting list. However, those who get approved for a living donation don’t need to wait for an organ from a deceased donor. This is why living donation can decrease time spent on the waiting list.
How long will it take to get a donor’s liver?
Children may wait just a few days or weeks if a living donor is available. If no living donor is available, it can take months or years for the right organ to become available.
Who can become a living donor?
To become a living donor, you must:
- Fall within the age range of 18 to 60.
- Have no history of liver disease, heart disease, diabetes, HIV, cancers, or other diseases.
- Meet all other living donor requirements.
What happens during a deceased-donor liver transplant?
When a liver becomes available, the hospital will tell your family to head there straight away. After a liver has left its donor’s body, it must go into the body of the person who needs it within hours.
When you arrive at the hospital, you and your child will visit with members of your team. Your child may enter the hospital’s pediatric transplant unit before the surgery takes place.
After some final bloodwork, your child will go to the operating room for surgery. This may take several hours, during which your team of specialists will regularly keep you in the loop.
After this, your child will go to the pediatric intensive care unit for close monitoring. They’ll then spend the rest of their stay in the hospital’s transplant unit. The length of hospital stays for pediatric liver transplants varies from one week to several weeks.
During hospital recovery, your team will teach you how to care for your child in the months to come. They’ll also give you information about medications, activity, diet, and other needs.
What happens during a living-donor liver transplant?
Your child and your child’s living donor can schedule the transplant for a convenient time.
During a living-donor liver transplant, doctors remove the recipient’s liver and replace it with part of the donor’s healthy liver. The donor’s operation comes first, and then a second team of surgeons handles your child’s.
As your child would with a deceased-donor transplant, they’ll first spend time in the pediatric intensive care unit for monitoring. Then, they’ll move to the hospital’s transplant unit.
Your child’s donor will recover in the hospital for about four to seven days. After this, they can head home.
What is the recovery time for pediatric liver transplant surgery?
Everyone recovers at their own pace. That said, hospital stays after surgery can range from one week to several weeks. Children who undergo simpler surgeries tend to feel fully recovered within a few months.
Finding Support Along the Way
A liver transplant can prove tiring for children, families, and other loved ones, both physically and emotionally. This is true whether you’re in the evaluation stage, on the waiting list, searching for a living donor, or preparing for the procedure.
UPMC works closely with families to provide social and mental health support along the way. UPMC’s Living Donor Champion Program, for example, helps you manage this so you can focus on your child’s health and well-being.
When you get a transplant at UPMC, you do so with the help of child life specialists, social workers, transplant coordinators, and psychologists.
Remember, you’re not alone in this journey.
Why UPMC Children’s Hospital of Pittsburgh for Liver Transplant?
From evaluation to recovery and the transition to adult care, UPMC Children’s Hospital of Pittsburgh remains a steadfast partner every step of the way.
UPMC is home to one of the oldest, largest, and most esteemed liver transplant programs in the U.S.
UPMC Children’s started the first pediatric transplant program in the U.S. more than 40 years ago. Now, we provide medical, emotional, financial, social, and educational support throughout the entire transplantation process.
The Hillman Center for Pediatric Transplantation at UPMC Children’s continues to rank among the best in the U.S. for pediatric liver transplant outcomes. That’s according to the Scientific Registry of Transplant Recipients.
We’re also one of the nation’s most experienced liver transplant programs. This is in terms of volume. We’ve performed more than 1,400 transplants to date.
The program’s liver transplant survival rates consistently beat the national average. This has attracted the largest geographic draw of patients among the nation’s pediatric transplant centers.
UPMC Children’s Pediatric Liver Transplant Program is an internationally recognized provider for children with end-stage liver disease. Families can feel confident that the team caring for their loved one can handle even the most complex cases.
UPMC’s Living Donor Champion Program offers resources that help with the search for a living donor. In addition, UPMC Children’s runs Camp Chihopi, a summer camp for young liver and intestine transplant patients. There, they can make friends, build confidence, and flourish after their transplant.
To learn more about the Pediatric Liver Transplant Program at UPMC Children’s Hospital of Pittsburgh, visit CHP.edu/Our-Services/Transplant/Liver.
About Transplant Services
For more than four decades, UPMC Transplant Services has been a leader in organ transplantation. Our clinicians have performed more than 20,000 organ transplant procedures, making UPMC one of the foremost organ transplant centers in the world. We are home to some of the world’s foremost transplant experts and take on some of the most challenging cases. Through research, we have developed new therapies that provide our patients better outcomes — so organ recipients can enjoy better health with fewer restrictions. Above all, we are committed to providing compassionate, complete care that can change – and save – our patients’ lives. Visit our website to find a provider near you.