At Children's Mercy, we know that receiving a liver transplant is a long journey that can be filled with complicated emotions and many questions. Our goal is prepare patients and families for what to expect during a liver transplant, from start to finish, so you feel empowered to best navigate your child's care.
If the liver is not absorbing or storing enough nutrients and vitamins from food, your child may not grow or develop normally.
Blood may not clot as fast as it should. This can cause your child to bruise easily or take longer to stop bleeding after an injury.
When the liver cannot process waste products, your child may have a buildup of the following:
bilirubin, which can cause the skin and eyes to turn yellow (also known as jaundice).
ammonia, which can cause irritability/fussiness or sleepiness. This is called hepatic encephalopathy.
Your child’s stomach may get bigger because of extra fluid in the abdomen. This is called ascites.
Your child may have more infections, especially in the ascitic fluid.
Your child’s skin may itch.
Your child may develop portal hypertension. This causes the spleen to become big and the veins in the esophagus and stomach to swell. These swollen veins are called varices. If the varices rupture, your child can have life-threatening bleeding.
A liver transplant is offered not only to help a child live longer, but also to improve their quality of life. Liver transplant is offered when no other medical or surgical options are available to fix a failing liver, but comes with many new responsibilities and challenges.
The transplant evaluation is a series of tests and visits with various health care providers. The liver transplant coordinator will schedule your child’s evaluation, which will most likely be done as an outpatient unless your child is admitted for another reason at the time of evaluation.
The evaluation will be done over approximately two to three days, but may take longer depending upon your child’s medical condition.
Why an evaluation is needed
To help decide if a liver transplant is necessary or if another treatment can be done instead.
To help decide if there are reasons a liver transplant cannot be done. (Are there any problems with other organs, such as heart or lungs, which would make liver transplant impossible?)
To help decide the urgency of liver transplant. (Is it needed now or sometime in the future?)
Education for you, your child and your family.
How to prepare for the evaluation
To help make the evaluation process as smooth as possible:
Bring your insurance or Medicaid card with you.
Arrive on time. If you are late, we may need to re-schedule your child’s appointments.
Please leave young siblings at home, if at all possible. Your focus needs to be on learning about the transplant.
Bring your child’s immunization (shot) records to the clinic appointment.
What happens during the evaluation
Your child will have a variety of tests and meetings that may include:
An appointment in the Liver Care Center that includes: a physical examination.
An evaluation by the transplant surgeon and hepatologist.
A visit with the transplant coordinator.
Blood type: A, B, AB, or O.
This will be done twice if your child has never had their blood type checked.
Blood chemistries such as sodium, potassium and kidney function tests.
Blood counts such as hemoglobin, hematocrit and white blood cell counts.
Liver function tests.
Blood for viruses, such as EBV, CMV, Varicella, HSV, and HIV.
Coagulation studies such as PT/PTT/INR/Fibrinogen, etc.
Tests for tuberculosis (test type depends on age).
Chest X-ray: looks at your child’s lungs.
Ultrasound with Doppler: done with sound waves and checks the liver, especially the blood vessels around the liver.
CT scan: looks at the shape and size of the liver and major blood vessels around the liver. It may be done if the ultrasound does not give the transplant team the needed information.
MRI (magnetic resonance imaging): looks at the liver and major blood vessels around the liver. It may be done in place of a CT scan.
Bone X-rays: Checks your child’s bones for rickets (or softening and weakening of bones usually due to extreme and prolonged vitamin D deficiency) and bone age.
Heart and Breathing Tests
Electrocardiogram (EKG, ECG): records the electrical activity of the heart.
Echocardiogram (ECHO): uses sound waves to check how well the heart is pumping and looks at the structure of the heart.
Pulmonary Function Tests (PFTs): checks lung function.
Liver biopsy: checks the liver tissue itself. The doctors take a small sample of liver with a special needle. The tissue is sent to the laboratory for testing. Your child will be asleep during this procedure.
Endoscopy: checks for varices in the esophagus and stomach. The doctor looks into the esophagus and stomach by inserting a small, flexible tube. Your child will be asleep during this procedure.
Cholangiogram: if needed, this test checks the bile ducts for any blockages.
Dental exam: to evaluate and treat any dental problems prior to the transplant.
Transplant anesthesiologist: the doctor who puts your child to sleep and monitors them throughout the transplant.
Infectious disease: the doctor who monitors and helps with treatment of your child for any diseases that may develop after the transplant or any disease that your child may have prior to transplant.
Dietitian: helps with proper nutrition prior to and after the transplant.
Social worker: a professional who is there for the family to help with understanding, coping and a variety of problems that may arise before or after the transplant.
Pediatric psychologist: a professional who helps your child and well as the family cope with the stresses associated with transplant.
Financial coordinator: helps provide information about insurance and other costs associated with transplant.
Child life specialist: a professional who helps prepare your child emotionally for the transplant and is there with your child throughout the hospital stay. They can also help siblings with understanding about having a sick brother or sister.
Chaplain: there to assist families as needed with faith and spiritual issues.
Additional evaluations are done on an as-needed basis and may include a cardiologist, nephrologist or hematologist.
Your child may not need all of these tests. The transplant team will decide which tests your child needs based on your child’s disease and medical condition.
After the evaluation, what's next?
Once the evaluation is finished (it can take up to a week for some of the lab tests to return), your child’s case will be presented to the Liver Transplant Selection Committee. This committee is made up of the team that evaluated your child and meets on a weekly basis.
This committee decides if your child needs a liver transplant and the urgency, and what your child needs to be in the best health possible for the transplant.
Does every child evaluated become a candidate?
No. The committee can make the following recommendations:
Accepted: the patient is a candidate for transplant and should be listed now.
Deferred: additional information and/or testing is needed, or the patient is not yet sick enough for transplant.
Denied: the patient is not considered an appropriate candidate for transplant, either because the patient is too sick to be transplanted, or there is a problem with another organ system, such as heart or lungs.
What happens if my child is accepted for transplant?
After the committee meets, the coordinator will:
Contact you by phone with the committee’s recommendations.
Request pre-approval from your insurance company or state Medicaid program for the transplant procedure. This may take one to two weeks.
Place your child’s name on the national waiting list once insurance/Medicaid approval has been received.
Contact you by phone to let you know your child is listed for transplant.
Send you a letter confirming your child’s status on the waiting list.
Waiting for an organ to become available can be a difficult and stressful time for families. As a parent, you may feel a sense of despair and a loss of control. The transplant team will do whatever we can to reduce your stress and allow you to continue your normal activities.
Where do organs for transplant come from?
There are two types of organ donors:
Deceased donors are:
Children and adults.
Critically ill or injured.
Have complete loss of brain function and have been declared dead.
Donors after circulatory death (DCD):
Children and adults.
Non-survivable illness or injury and life support is withdrawn.
Strict criteria for donation.
Rarely used in children.
Your child may receive a whole liver or part of one depending on the size of the available donor. This will be discussed with you at the time of evaluation.
Donor organs are distributed according to a national system run by the United Network for Organ Sharing (UNOS). The following information about your child is entered into the national computer system:
Social Security number.
Date of birth.
Height and weight.
Size donor accepted.
Your child will be given either a PELD (if under 12 years of age) or MELD (12 years of age or older) score. This score is used to measure how urgently a patient needs a transplant. The higher the score, the more urgent the need for transplant.
The priority exception to the PELD/MELD score is a category known as Status 1.
Status 1A means:
The patient suddenly develops liver disease, such as fulminant liver failure.
The patient will not survive more than seven days without a transplant.
Status 1B means:
Similar to Status 1A, but for patients with chronic liver disease.
There are very strict criteria for a patient to be Status 1A or 1B. The transplant team will discuss this with you, should the need arise.
Please note, your child’s PELD/MELD score will change over time. The transplant team will keep you updated as changes occur.
How does the UNOS donor matching process work?
The donor’s medical information is put into a computer program.
The computer then performs a “match run.”
Think of the list as a “pool” of patients that UNOS searches for a match.
The liver is offered to the patient who has the highest PELD or MELD score.
Other factors include:
The location of the donor and the patient.
The amount of time the patient has been on the waiting list.
Same blood type: Blood types are O, A, B and AB. Liver transplants are usually performed with the same blood type. This also includes O, which is the “universal donor” and can be given to types A or B.
Different blood type: Under urgent conditions, your child may receive a different blood type liver, such as blood type A to type O. The transplant team will discuss this with you, should this be needed.
UNOS notifies the Liver Transplant Team that a liver is available
The transplant physician and surgeons review the donor information and decide whether or not to accept the organ. This decision is based on donor factors which may affect the condition of the liver and whether the liver is the best match for your child.
The transplant coordinator notifies you that an organ is available.
Can my child be listed at more than one transplant center?
Yes, your child can be listed at as many transplant centers as you would like. For this to happen, you must:
Check with your insurance company to see if they will cover the cost of the transplant at another center, including the cost of evaluation.
Have your child evaluated at each center according to their protocol. Some centers will accept testing that was done elsewhere.
You will be provided with additional information about this at the time of evaluation. If you have any questions, please contact your transplant coordinator.
Keep your child in school and involved with activities, if possible. Try to keep your child’s routine as normal as possible.
When the call comes
When an appropriate donor has been identified, the transplant coordinator will call you. The coordinator will also:
Check that your child does not have a fever, cold, runny nose, etc.
Check that your child has not received any recent immunizations.
Have your child stop eating and drinking to prepare for the surgery. Tube feedings will also be stopped, if applicable.
Provide instructions on where and what time to bring your child to the hospital. You will have plenty of time to get here, so please drive carefully and obey all traffic laws!
How long will my child wait?
There is no way to know how long your child needs to wait for a donor liver; it could be a few days or many months to years. Your child’s wait time can depend on their age, weight, blood group and status.
The wait for transplant can be an anxious and emotional one. It is important to continue to find balance and a sense of normalcy for yourself, your child and the rest of your family.
You will need to be at the hospital several hours (it can be as long as 24 to 48 hours) before your child is taken to the operating room. That time is spent preparing your child, as well as the organ, for the procedure and making sure both are in acceptable condition for surgery.
It is rare, but surgery can be canceled if there are concerns with the donor liver or your child. The transplant team will keep you informed of plans for the surgery.
When you arrive at the hospital, your child will be taken to a room either in the Pediatric Intensive Care Unit or 5 Sutherland Tower to get ready for surgery; other floors may be used depending on bed availability in the hospital.
During the next few hours, the team will perform a medical review of your child and some tests and procedures that may include:
A medical history and physical examination.
A review of the medications your child currently receives.
Once your child is cleared for transplant surgery:
You and your child will be taken to an area in the PACU prior to going to the operating room. Both are located on the second floor of the hospital.
The anesthesiologist will meet with you in the PACU to take your child back to the operating room.
You will then be directed to a waiting room where you and other family members will stay while the transplant is in progress. You are encouraged to get some rest and eat during the procedure, but please check with the operating room desk before leaving to let them know where you will be.
During the operation
The surgery is performed under general anesthesia.
Prior to the start of surgery, it may take an hour or more to insert the tubes and equipment needed for the transplant. Please note that your child will be asleep while these tubes are being placed.
An endotracheal tube (ET tube) to help your child breathe.
A nasogastric tube (NG tube) that goes into the nose and helps prevent vomiting and possible aspiration.
Intravenous (IV) lines inserted into the arms, legs, or neck to monitor blood pressure and heart function and give fluids, medications, blood.
Urinary catheter (Foley) inserted into the bladder to monitor urine output to help assess kidney function.
The surgery usually takes between 6 and 12 hours.
The transplant coordinator or operating room nurse will give you periodic updates on how your child is doing and how the surgery is progressing.
Once the donor liver arrives, it will be examined by the surgeon to ensure it is acceptable for transplant.
During surgery, a large incision is made and your child’s old liver is removed.
The new liver is sewn in place and blood flow is returned to the new liver. Blood vessels must be sewn together in four places (hepatic artery, portal vein, and the vena cava above and below the liver). Once the new liver is sewn in, blood is allowed to flow through it.
The bile ducts are connected:
Two types of bile duct connections can be used, depending on the type of liver disease and the size of your child’s bile ducts.
The most common pediatric bile duct connection is a “Roux-en-Y” (pronounced roo-en-y).
A portion of the small intestine is brought up to the bile duct of the transplanted liver. When completed, the shape resembles a “Y.”
A stent may be placed internally across the area where the bile duct and intestine are sewn together to help prevent the area from closing off and blocking bile flow during the healing process.
The connection will pass out through your child’s stool within a few months.
If the bile ducts are large enough, an end-to-end anastomosis will be performed.
Any bleeding is controlled, and drains are placed. The incision is then closed.
Once the surgery is complete, the surgeons will come to you and discuss the operation.
After leaving the hospital, you will be required to stay in the Kansas City area for approximately two weeks while the transplant team “fine-tunes” your child’s medications and makes sure he/she is doing well enough to return home.
After discharge, you will need to return to the hospital 2-4 times per week for follow-up visits. At least two of those visits will be for blood work and examinations.
Your child will need their blood drawn usually an hour prior to your visit.
HOLD your child’s morning dose of Prograf (Tacrolimus) and CellCept (Mycophenolate Mofetil) until after the blood work has been drawn.
The transplant team makes determinations about your child’s care based on that lab work and their clinical exam.
Bring your family notebook and all medications with you to each visit.
Give your pharmacy several days notice before you run out of medication to get a refill.
Once you are back home, your child will still need lab work two times per week for at least one month. After that time, if labs are stable and your child is doing well, labs and clinic visits will be decreased to once a week, then eventually to every two weeks, and finally to once per month.
Your child’s primary care physician will be the primary medical provider when you return home. The transplant team will be in close contact with the PCP to make medication adjustments based on lab results and your child’s progress.
The transplant team makes changes to the medication regimen based on lab work. We need to be able to contact you, so if you frequently do not answer your phone, we need to have a way to leave a message. If after labs you do not hear from our team, that means everything looks great and no changes are needed. Your child’s PCP will be notified by phone or usually by letter if changes are made.
If you have concerns about your child, first contact your PCP to have your child evaluated. If your child’s doctor has questions or concerns, they will contact us for a consultation. This can be done at anytime 24 hours a day.
If you have questions for the transplant team, a coordinator will be available Monday through Friday from 8 a.m. to 5 p.m. Contact the team at (816) 460-1010 for:
Questions regarding medications.
Scheduling follow-up appointments.
If you call on the weekend or outside of the above hours and it is urgent, the answering service will page the transplant team member on call and they will return your call as soon as possible.
Your child will need routine evaluations by the transplant team:
After the operation and at three and six months for one outpatient day.
After the first year, at least a yearly follow-up is scheduled.
At your child’s visits:
Lab work and other procedures will be obtained
Your child will be evaluated by a dietitian
A transplant surgeon or physician will examine your child
A transplant coordinator will meet with you about changes and/or further instructions.
We will send a summary of these visits to your child’s PCP along with all lab and test results. If there are any changes in medications or labs, we will call your child’s PCP to discuss those changes.
Your child will return to their previous activity level almost immediately.
While we encourage everyday play activity (riding a bike, going on walks), your child should not participate in competitive sports, vigorous exercise, or physical education until cleared by the transplant team (usually three months after surgery).
It is not unusual for children to have weak muscles prior to transplant due to their liver disease; however, after transplant you will likely notice gradual improvements.
Steroids post-transplant surgery can also cause muscle weakness. Physical therapy may be started while your child is in the hospital and may be continued after discharge.
Adjusting to life after transplant
Readjusting to life after a liver transplant takes time.
Feeling worried or unprepared to cope without the support of medical staff is common and usually gets better with time, support and resources provided by the medical team to make the transition to home easier.
Common temporary reactions after leaving the hospital
Clinging to parents or siblings.
Bed wetting or thumb sucking.
Difficulty sleeping alone or nightmares.
Older children and teens:
Complaining of headaches or stomachaches
Changes in sleeping and eating patterns
Being easily startled or overly concerned about things.
Being over-protective, even when things are going well.
Worrying about being able to care for their child’s medical needs on their own.
If things don’t improve within a few weeks, get worse, or begin to interfere with daily activities, talk with the transplant team about getting some extra help.
Helping your child cope after transplant
Allow everyone some time to adjust. The road to transplant can be a long one in which new patterns of behavior may have developed. Be patient and reassure family members, including siblings, that things are returning to normal.
Gradually get back to daily routines. Children feel safe when things are predictable. As your child recovers from transplant, encourage participation in previously enjoyable activities (with your doctor’s approval). This also includes gradually giving your child more responsibility in things, such as chores.
Set normal limits. Your child has been through a lot and it is easy to be lax on the rules or expectations. However, maintaining normal expectations and being consistent with rewards and discipline promotes better adjustment over time.
Encourage time with friends. When children are away from school or their friends for an extended period of time, they may feel “different” or worry about what their friends will say. Remind your child that friends ask questions because they care. Work with your child on having answers to questions that friends may ask to avoid feeling caught off guard.
Give yourself time to heal. Helping your child manage the post-transplant treatment regimen and providing emotional support will be challenging if you are feeling overwhelmed, worried or angry. Talk with others about your feelings. Don’t be afraid to ask for help, and make time again for things you enjoy.
Your child should visit a dentist a minimum of every six months, for several reasons:
Some transplant medications can cause gum overgrowth that is aggravated by plaque. Routine dental hygiene is effective in decreasing the severity.
Medications that lower your child’s immune system can potentially cause complications from a cavity, such as a tooth abscess.
Remember, when your child gets their check-ups or treatments they may need antibiotic prophylaxis according to the guidelines established by the American Heart Association. Your local dentist or PCP will be familiar with the guidelines. However, if you have any questions, you can always call the transplant team.
Your child should have routine eye exams every year and as your PCP recommends.
To prevent infection after transplant, it is very important that your child get their immunizations (vaccines).
In general, your child CANNOT receive any live virus vaccinations:
MMR (mumps, measles, or rubella).
OPV (oral polio vaccine).
Varicella (chicken pox vaccine).
Inhaled influenza (FluMist).
In general, your child can receive the following vaccinations:
DTap/Tdap (tetanus, diphtheria, pertussis).
Hepatitis B series.
IPV (injectable polio vaccine).
Hepatitis A series.
HIB (H. influenza vaccine).
Pneumococcal 13 and 23 vaccines.
Influenza (flu) shot.
It is okay for other family members to receive the Varicella and MMR, but not the inhaled influenza (FluMist) or the OPV. If a sibling receives one of these vaccines, we recommend good handwashing, no sharing of cups/utensils, and no sleeping together for one week following vaccination.
Some schools or activity programs may need a letter explaining why your child has not had live virus vaccines. The transplant team can provide this letter to you.
It is recommended for transplant patients and their families to receive the influenza vaccine every year. Household members should get the injectable (needle) flu vaccine only.
If your family is planning international travel, you may need additional immunizations. Please contact the transplant team for more information.
Medical alert bracelet or necklace
It is very important that your child wear a medical alert bracelet or necklace at all times. An order form is included at the end of the handbook and included here.
Nutrition after liver transplant
It is important for your child to eat a well-balanced diet.
While on steroids your child needs to be on a no-added salt diet (the same diet they were on in the hospital).
Include high protein foods (meat, poultry, milk, cheese) in your child’s diet.
Protein is necessary to build muscle.
Steroids can slow production of new muscle.
Steroids can increase your child’s appetite and cause weight gain.
Be mindful of overeating as your child will feel hungry and eating will not necessarily satisfy this hunger.
Establish good eating habits. Limit junk food and high fat foods.
A dietitian will meet with you frequently to discuss recommendations and address any questions or concerns.
No special skin care is necessary. Notify your child’s PCP of any new raised areas or sores that won’t heal, or any warts or moles that have changed.
Acne is often a side effect of steroids. Encourage your child to wash their face regularly with an over-the-counter acne wash. If acne becomes a problem, your child may need to see a dermatologist. Contact the transplant team before beginning any dermatologic treatments or prescription medications.
Warts are viral infections of the skin. In a child that is immunosuppressed, warts can spread easily, so it is important to seek treatment from your PCP or a dermatologist as soon as a wart is noticed. This helps prevent spreading of the infection.
Because of your child’s medications, their skin is more sensitive to the sun and they are at greater risk of developing skin cancer.
Limit sun exposure between 10 a.m. and 2 p.m.
Always use sunscreen with a minimum SPF of 30 and broad-spectrum coverage.
Apply sunscreen frequently throughout the day. Water and perspiration can decrease effectiveness.
Encourage your child to wear light, protective clothing, as well as a hat.
Liver transplant guide
The Pediatric Liver Transplant team has put together a downloadable guide for patients and families with detailed information about the liver and transplant process.