Preparing for a Pediatric Liver Transplant

Here are some simple steps you and your family can take while your child waits for a deceased donor liver transplant.

Stay in touch and be ready at all times.

  • Make sure the Children’s Liver Transplant coordinator can reach you at all times. Provide school, work, family and vacation phone numbers. This ensures that the pediatric liver transplant team can contact you right away.
  • Tell us if your phone number or address changes. If we can’t make contact, the liver will be given to another patient waiting for a liver transplant.
  • The Children’s Liver Transplant team may give you a pager. Check your pager each day to make sure it works. Keep it with you at all times.
  • Call the transplant coordinator before you leave for vacation. Be sure your phone and pager are working so we can contact you at all times.
  • Contact the Children’s Liver Transplant financial counselor if your family has a change in work status or insurance coverage.

Have a plan to get to the hospital the day of the liver transplant.

  • The pediatric liver transplant coordinator will tell you when your child must arrive at Children’s at Egleston.
  • Make sure your car or truck is working well and is ready for your trip at any time.
  • Have a plan to take care of siblings during the liver transplant.

Make sure your child is ready.

  • Call the transplant coordinator if your child has any illness or infection, including common things like a cold and sore throat. Your child’s transplant will be cancelled if your child is sick.
  • If your child becomes ill, get treatment right away. This helps ensure he will be ready for liver transplant when a donor liver is ready.
  • Make sure the pediatric liver transplant team is aware of any changes in your child’s health.

Help your child get in good physical shape for the liver transplant.

  • Have him eat healthy foods as allowed by his diet guidelines. Keep him as active as possible.
  • Spend time with your child. Talk with him about his liver transplant. Let him express feelings, fears or concerns. Let him ask questions and be truthful with your answers. The Children’s Liver Transplant team will be happy to help you if concerns or questions arise.
  • Keep your child in school and involved in activities, if possible. Try to keep your child’s routines normal and balanced.

Pager

The Children’s social worker can arrange for your pager. As soon as your child is listed for a liver transplant, the team must be able to reach you at all times. Carry a pager or cell phone at all times so you can be reached as soon as a donor liver is available. This is your responsibility. Be sure to call us back as quickly as possible.

When the Call Comes

The Children’s Liver Transplant coordinator will call you when the United Network for Organ Sharing (UNOS) finds a donor liver. When the call comes, your child must get to Children’s at Egleston as quickly and safely as possible. As soon as you are called, your child should stop eating and drinking so that his stomach will be empty.

When you receive the call, bring:

  • A list of your child’s medicine
  • A list of drug allergies
  • Your child’s health information
  • Your health insurance card
  • Make sure your child takes all of his medicine as prescribed to prevent problems. It is okay to swallow small sips of water with his medicine.

Transportation

You need to get to the hospital as quickly and safely as possible. If you live far from Atlanta, your child and you should be ready to fly here for the liver transplant if needed. If your insurance company does not cover the flights, you must pay for them.