Our Pediatric Liver Transplant Program Video Series

Introduction to the Pediatric Liver Transplant Program at CHOP

Narrator : If you're watching this program, it means you're involved in the liver transplant process at the Children's Hospital of Philadelphia. It means you're nervous, probably even a little scared. You don't have to be. Children's Hospital understands that it's frightening to learn that a child needs to have a liver transplant and that the scariest part is not knowing what's going to happen next.

We're going to show you. Understanding the process is the best way to be prepared for what happens next. And the more you know, the less scared you have to be.

Children's Hospital has one of the largest pediatric liver centers in the country and performs many liver transplants a year. But every member of the team recognizes that the transplant that matters the most is yours or your child's.

This video will explain what you need to know while you're waiting for the transplant, what happens during the surgery, and what to expect during the recovery period.

You can be sure of this: the liver transplant team and everyone throughout Children's Hospital are dedicated to creating the best possible experience for every child and family who comes here.

About Pediatric Liver Transplantation and the Transplant Team

Narrator : A liver transplant is a complicated surgical procedure that replaces a diseased liver with a healthy one from another person with either an entire liver or just a section of one if a whole one is too big.

Before the transplant your child may look and feel pretty sick. The young people featured in this video have received liver transplants and are feeling healthy and active. With a successful liver transplant, your child should able to achieve a full and healthy lifestyle.

There are a number of people who will work with you before, during, and after the process. You should know who they are and how they can help you. The physicians manage your child's care and perform the transplant surgery. The pediatric hepatologist specializes in diseases of the liver, and the transplant surgeon does the operation and takes care of your child following the surgery. The transplant coordinator is your main contact. The coordinator organizes the process from early evaluation to post transplant care. The nurses in the intensive care unit and on the ward provide day-to-day care for your child in the hospital. They will also teach you how to care for your child at home after the transplant. A nutritionist will help you with the best diet plan to make sure your child eats well, grows, and stays as healthy as possible. Support staff are available to help with practical, financial, and emotional issues during the process. A social worker, child life specialist, and case manager will all be available to you. These support staff can and should be contacted through your transplant coordinator. If you have questions or concerns, call your coordinator or consult our website at www.chop.edu/livertransplant.

Pediatric Liver Transplant Patient Evaluation and the Waiting List

Narrator : The first step in the process is an evaluation of your child's condition. This is when it's decided whether your child needs a transplant. At that time your child's name may be placed on the liver transplant waiting list.

The evaluation is usually done on an outpatient basis. You'll review medical history with a hepatologist, or liver specialist. Many blood tests will be performed. Special X-rays and any other required tests will be completed. This usually happens within a day or two, but it can take longer.

Your family will meet with members of the transplant team and talk about the surgical procedure, donor options, and pre and postoperative care. They will talk about risks and possible complications as well. Team members will answer each and every question you have about the process. Try to write down questions as you think about them so you'll remember to ask them when you meet with the team.

Once it has been decided that a liver transplant is needed, your child will be listed with the United Network for Organ Sharing, or UNOS, for liver transplant at the Children's Hospital of Philadelphia. This is a national agency that works with the government and tracks people who need transplants. They maintain a national database and distribute organs as they become available according to need. UNOS follows the outcome for patients after a transplant indefinitely and can provide information on all centers that perform transplants. Your child's place on the transplant list will depend on a number of factors and a calculated score called PELD, or Pediatric End-Stage Liver Disease score. Children with the most urgent need are transplanted as soon as possible.

As in just about everything else in life, waiting can be the hardest part. There's no sure way of telling how soon a liver will become available. The best thing you can do is to keep things as normal as possible. Watch TV. Eat dinner. Do homework. Play games. Pet your dog or cat. Talk to your friends or family when you're feeling stressed out. And ask for help if you need it.

Most importantly, focus on the care and health of your child. You want your child to be as healthy as possible when the time of their transplant comes. Keep up with doctor visits and with regularly scheduled immunizations. It is very important to stay in touch with your transplant coordinator, especially if there are any changes in your child's health.

Always make sure that the transplant team knows where you are and has your phone numbers. When a suitable organ becomes available, you will be contacted immediately. You will be given a beeper to carry with you at all times. When the beeper goes off, you have to call the number on the display and be ready to go to the hospital. Have a bag packed and know how you're going to get there as quickly and as safely as possible. Remember, if the coordinator can't reach you when a liver becomes available, he may have to go to the next person on the list.

When the time comes and you are told that an organ is available, the coordinator will ask you some questions about your child's health. Have there been any recent colds, flu, or fever? Has there been any exposure to chicken pox, measles, or other infectious diseases? Once the decision has been made that your child is in their best possible health for a transplant, you will be asked to come to the hospital as soon as possible. Again, be ready. Your child should not eat or drink anything from this moment on in preparation for surgery.

There's one thing we should note. On very rare occasions, patients are called into the hospital sometimes as far as the operating room to find that the donor liver is unsuitable for the child. This can happen because the planning of the donor surgery and the transplant are timed very closely together to minimize the time the liver spends outside the body. If this happens it can be extremely disappointing. But bear in mind, the surgical team will only perform the operation when they are confident that the organ is perfect for your child.

At the Hospital: Surgery and Post-Operation for Pediatric Liver Transplant

Narrator : When you go to the hospital, go to the Admissions Office on the 1st floor of the main building or to the Emergency Department if it's after midnight. Once you've been admitted, you will be taken to a room on a patient unit. An intravenous line, or IV, will be placed in your child. This is for antibiotics and other medications. Blood will be drawn for testing, and a urine sample will be taken. X-rays will also be taken. The anesthesiologist is the doctor who will make sure your child sleeps through surgery and has no pain. The transplant surgeon or surgical resident will perform a physical exam on your child so that they have the clearest possible picture of your child's health. They will review the surgical procedure with you and answer any questions you may have. They will ask you to sign the consent forms for the anesthesia and the surgery; standard procedure before any operation.

The surgical team consists of anesthesiologists, surgeons, registered nurses, and technicians. The call to go into the Operating Room will come 1 hour before the surgery starts so that the anesthesiologist and nurses can prepare your child. Sleep medication will be delivered through the IV line. Once your child is deeply asleep, the team will attach the lines and catheters they need to monitor urine output, blood pressure, pulse rate, temperature, and breathing. Blood and blood products such as platelets and plasma may need to be given during the operation.

The surgeon will begin the procedure by cleaning your child's skin. Drapes will be used to protect the area. An incision will be made in the shape of a frown or an upside down "Y". The diseased liver will be removed, and the healthy liver will be sewn into place by the surgeon.

The actual liver transplant may take 5 to 8 hours plus the time needed by the anesthesiologist. Liver transplant for a child is a very complicated procedure, so it's hard to say exactly how long each transplant will take.

After the operation is over, your child will move to the Pediatric Intensive Care Unit, or PICU. You will be asked to wait while nurses and physicians get your child settled in. The staff in the PICU will monitor your child's heart rate, breathing rate, blood pressure, and oxygen level. IV pumps will be in place to supply fluids and medications. Some have alarms that may go off. The nurses will check your child and the equipment when this happens.

A tube will be in place in either your child's nose or mouth to help with breathing after surgery. Your child will not be able to talk, eat, or drink with the tube in place but will able to write on a pad or use hand signals. This tube may be removed in the operating room or soon after.

Other tubes and drains will be put into place during surgery. They help to drain excess fluids that result from the operation. Some of these will be removed on the first or second day after surgery. A Foley catheter will be in place to drain urine from the bladder and to monitor kidney function. A Broviac catheter may be inserted in a large vein in the neck. It can be used to give medications and IV fluids or to draw blood. Some children may go home with a Broviac catheter in place for giving IV medications. If so, you will be taught how to care for it.

This time immediately after the surgery is a time for testing and monitoring your child's condition. Blood tests will be done daily. Chest X-rays will be used to assess your child's lungs. An ultrasound will check the proper flow of blood to the new liver, a primary concern after surgery. Sometimes complications occur such as infection, bleeding, or the need for re-operation or re-transplant. Be assured that everything possible will be done to assure a successful outcome and a complete recovery.

Once your child is stable and doesn't require intensive monitoring, they will be transferred from the PICU to a surgical unit. The surroundings will be quieter, and you can start thinking about some of the things you can do to help your child during recovery. Walking around the room or down the hallway helps to build strength and activity. Your nurse will help you with coughing and deep breathing exercises. As the recovery progresses, your child will advance from clear liquids to solid foods. The body needs well balanced meals to heal and grow. As your child feels better, it will be important to relax and play, to have fun, and start to feel normal again. The Child Life Specialist will help with the emotional part of the recovery process.

Going Home After Pediatric Liver Transplant at CHOP

Narrator : Sooner than you think, it will be time to leave the hospital and go home. The first month after the transplant is a busy time. You will be visiting the Liver Transplant Clinic often, and you may have to have blood work done between clinic visits. It's also a time to adjust to being out of the hospital environment to taking care of your child at home and to getting life back to normal.

After the transplant, especially in the first year, you will have to be on the lookout for signs of rejection. Early signs may include fever or abdominal pain. Later signs are jaundice or a yellow color of the skin and eyes, and changes in stool or urine color.

Your child will also need to take medicines to prevent infections, which are more likely to occur because the immune system is being suppressed. Many of these will be stopped by about one year after the transplant. Your physician may also prescribe high blood pressure medicine or a stronger anti-rejection medicines as needed.

When children are discharged from the hospital, they are generally taking two medications to prevent rejection and six to eight medications to prevent side effects from the first two. Over the first few months, one of the rejection medications will be gradually discontinued, and the second will be decreased. The other medications can then gradually be stopped so that by the end of year one most children take a single medication twice a day.

You will receive instructions on how to administer your child's medication once you're home. It is important that you learn why each medication is being taken and follow the directions exactly. It will help you if you develop a plan and follow the same routine every day. Never let your child's medications run out. Always refill them at least a week ahead of time. And if you have any problems with refills, call your transplant coordinator right away to get the problem sorted out.

If you noticed any changes in your child's health, a persistent cold or a fever, especially in the first few months after leaving the hospital, call your transplant coordinator. Don't give your child any medications that haven't been prescribed by the transplant team without checking first.

Living with a transplant is a lifelong process. Children with transplants take immunosuppressants and other medications to prevent rejection for the rest of their lives. Regular checkups and follow-ups will continue into their adult years. They'll have to learn how and why to take their medications on their own as they grow up and become more independent. But that's about it. Almost all kids who receive of a liver transplant are able to live normal lives with very few restrictions.

They are expected to return to a full range of age-appropriate activities. In fact, after the transplant, they often find that they can do most things better than before because they don't feel sick all the time. In general, children who have undergone liver transplantation are able to participate in school, work, and can expect to have children of their own.

Every child is unique, and every transplant is different. Research to improve the process, much of it conducted right here at the Children's Hospital of Philadelphia, is constantly under way. Today, we have every reason to believe that children who have liver transplants can live long and healthy lives. They can get back to the business of being kids again.