Preparing for a Pediatric Heart Transplant

In order to make the day of the heart transplant go smoothly and safely, it is important that families plan ahead. They should make arrangements well in advance for child care for siblings, time off from work, pet care, etc., so they can leave at a moment’s notice when a donated heart becomes available for their child.

Here are some simple steps families can take while their child waits for a pediatric heart transplant:

Stay in touch and be ready at all times.

    • Make sure the Children’s Heart Transplant coordinator can reach you at all times. Provide school, work, family and vacation phone numbers. This ensures that the Children’s Heart Transplant team can contact you right away.
    • Tell us if your phone number or address changes. If we cannot make contact with you, the heart will be given to another patient waiting for a heart transplant.
    • The Children’s Heart Transplant team may give you a pager. Check your pager each day to make sure it works. Keep it with you at all times.
    • Contact the Children’s Heart 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 pediatric heart transplant.

      • The heart transplant coordinator will tell you when the 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 for family or friends to take care of other children and siblings during the pediatric heart transplant.

      Make sure your child is ready.

        • Make sure the Children’s Heart Transplant team is aware of any changes in the child’s health.
        • Report all infections. The heart transplant may be canceled if the child is sick.
        • If the child becomes ill, get treatment right away. This helps ensure he will be ready for the pediatric heart transplant when a donor heart is ready.

        Help the child get in good physical shape for the pediatric heart transplant.

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

          Pager

          The social worker can arrange for a family to have a pager. As soon as the child is listed for a heart transplant, the Children’s Heart Transplant team must be able to reach the family at all times. Families must carry a pager or cell phone at all times so they you can be reached as soon as a donor heart is available. This is the family's responsibility.

          Families need to call the Children’s Heart Transplant team back within five to 10 minutes of receiving the call or page.

          When the Call Comes

          The Children’s Heart Transplant coordinator will call or page the family when the United Network for Organ Sharing (UNOS) finds a donor heart. When the call comes, the child must get to Children’s at Egleston as quickly and safely as possible.

          • When the family receives the call, they need to plan to leave their house within 30 minutes. The child should stop eating and drinking so his stomach will be empty. Make sure the child takes all of his medicine as prescribed to prevent problems. It is okay to swallow small sips of water with his medicine.

          Items to bring to the hospital:

          • List of the child’s medicines
          • All of the child’s medicine in original bottles
          • List of drug allergies
          • Child’s health information
          • Health insurance card

          Transportation

          Families need to get to the hospital as quickly and safely as possible, sometimes in less than three hours. If families live far from Atlanta, they should be ready to fly here for the pediatric heart transplant if needed.

          The pediatric heart transplant surgeon will decide whether families should drive or fly to the hospital on the day of the pediatric heart transplant. The Children’s Heart Transplant coordinator and social worker will help families set up air transportation with an air ambulance company that is available 24 hours a day.

          If the family's insurance company does not cover the flight, they must pay for it. Families need to talk to their insurance carrier about how to make these arrangements.