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Facing a Heart Transplant

SSM Health Cardinal Glennon Children’s Hospital provides a full range of pediatric heart transplant services before, during, and after transplant. Once you've been referred to our team, our transplant coordinators will help coordinate your care and are available anytime to answer your questions. From your pre-transplant evaluation through post-surgery care,& our team of SLUCare Physician Group experts will be by your side the entire way.

The Evaluation Process

A pre-transplant evaluation is necessary to determine the risks and benefits of transplantation for your child and to identify any potential problems that could increase the risk of complications during the surgery.

The evaluation usually consists of:

  • Blood tests
  • CT scan
  • X-Ray
  • EKG
  • Echocardiogram
  • Pulmonary function test

While You Are Awaiting Transplant

If the transplant team determines that your child is a candidate for a heart transplant, your child will be placed in the UNOS waiting list. Unfortunately the waiting list is unpredictable, so we are unable to give you an accurate timeframe of how long your child will have to wait for a new heart. It could be one day or one year. Here are a few things you should consider while waiting:

  • Stay as active as possible and live your life as you usually would
  • Have a way for your transplant coordinator to contact your family at all times
  • Take steps to avoid infection:
    • Avoid crowds during cold and flu season
    • Don’t share eating utensils or glasses with others
    • Avoid people who are sick
    • Carry antibacterial cleaning solutions with you
  • Have your child’s labs drawn as ordered and keep your appointments with your doctor. Not doing what your doctor asks could lead to your child’s removal from the transplant list.
  • Keep a suitcase packed with the items your family will need during your child’s hospitalization so that you are ready on a moment’s notice.
  • Contact your transplant coordinator if your child has fever, diarrhea, vomiting or runny nose. If your child has an infection you may need to be temporarily deactivated while the infection resolves.

Life After a Heart Transplant

After you go home, your child will need to be seen by your physician and have blood work drawn regularly. These check-ups ensure that the new heart is still working correctly, that your child’s body is not rejecting the heart and that your child’s dose of immunosuppressant medication is correct. The follow up schedule usually includes the following visits:

  • Two times a week for the first month
  • Once a week for the second month
  • One visit every two weeks for the third month
  • Once a month for the remainder of the first year
  • Every three months during the second and third years after transplant
  • After the third year, visits are decreased to every 6 months if there are no signs of rejection

Your child may need to be seen more frequently if there are any problems, such as rejection or infection. Your transplant coordinator will help you schedule and plan for your follow-up care, so you know what to expect.

Life after a heart transplant can be exciting, but it can also still be anxiety-ridden. Most children go on to enjoy typical, active childhoods, including school and activities, after the initial recovery period.

The SLUCare Physician Group surgeons at SSM Health Cardinal Glennon Children’s Hospital are experienced in all types of heart transplant methods, so they can offer the best option to meet each child’s needs. If you have any questions or concerns, do not hesitate to reach out to us – day or night – and we will be by your side every step of the way. Call us today at (314) 577-5351 to schedule an appointment or request a second opinion.

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