Our Summary

This research paper discusses a rising issue: more and more children are needing heart transplants. Although there have been advances in heart failure treatments, the number of children who pass away while waiting for a suitable heart donor is alarmingly high. Roughly 13% of children and 25% of infants on the heart transplant waiting list don’t survive long enough to receive a transplant.

To address this issue, a group of experts from the Advanced Cardiac Therapies Improving Outcomes Collaborative Learning Network (also known as ACTION) held a two-day meeting in 2019. Their goal was to better understand why children on the heart transplant waiting list are dying and how to increase the number of successful heart transplants for children.

They used a method called improvement science to break down the process of heart failure to transplantation into six key stages. They then looked at each stage to identify where problems occur and how these can be improved. This led to the initiation of several projects aimed at reducing the number of children dying while waiting for a heart transplant.

FAQs

  1. What is the mortality rate for children and infants on the heart transplant waitlist?
  2. What are the objectives of the Advanced Cardiac Therapies Improving Outcomes Collaborative Learning Network (ACTION)?
  3. What steps are being taken to reduce waitlist mortality for pediatric heart transplants?

Doctor’s Tip

One helpful tip that a doctor might tell a patient about heart transplant is to closely follow all post-transplant medication and treatment regimens as prescribed. This includes taking immunosuppressant medications to prevent rejection of the new heart, attending regular follow-up appointments, and making healthy lifestyle choices to support overall heart health. By following these recommendations, patients can improve their chances of a successful transplant outcome and long-term heart function.

Suitable For

Patients who are typically recommended for heart transplant are those with end-stage heart failure who have not responded to other treatments, such as medication, lifestyle changes, or surgical interventions. This includes children and infants who are at high risk of mortality while waiting for a suitable donor organ. The decision to recommend a heart transplant is made by a multidisciplinary team of healthcare professionals, taking into consideration the patient’s overall health, prognosis, and likelihood of success with a transplant.

Timeline

Before heart transplant:

  1. Patient is diagnosed with end-stage heart failure and referred for heart transplant evaluation.
  2. Patient undergoes extensive medical evaluation to determine eligibility for transplantation.
  3. Patient is placed on the heart transplant waitlist and waits for a suitable donor organ to become available.
  4. Patient may require mechanical support such as a ventricular assist device (VAD) while waiting for transplant.
  5. Patient experiences physical and emotional challenges while waiting for transplant, including potential deterioration of health.

After heart transplant:

  1. Patient receives a suitable donor heart and undergoes heart transplant surgery.
  2. Patient is closely monitored in the intensive care unit (ICU) for complications and rejection of the new heart.
  3. Patient undergoes rehabilitation and recovery to regain strength and function post-transplant.
  4. Patient requires lifelong immunosuppressive medications to prevent rejection of the transplanted heart.
  5. Patient undergoes regular medical follow-up appointments and monitoring to ensure the health and function of the new heart.
  6. Patient may experience complications or rejection episodes that require intervention or adjustment of medications.
  7. Patient may return to a more normal lifestyle with improved heart function and quality of life.

What to Ask Your Doctor

  1. What is the success rate of heart transplant surgeries in children?
  2. How long is the typical wait time for a suitable donor organ for a child?
  3. What are the potential risks and complications associated with a heart transplant in a child?
  4. How will the child’s quality of life be affected after a heart transplant?
  5. What are the long-term implications and follow-up care needed after a heart transplant?
  6. How can we optimize the child’s chances of receiving a suitable donor organ?
  7. Are there any alternative treatments or options available besides a heart transplant?
  8. How can we ensure the best possible outcome for the child during and after the transplant surgery?
  9. What support services are available for the child and their family throughout the transplant process?
  10. How can we minimize the risk of waitlist mortality for children waiting for a heart transplant?

Reference

Authors: Hollander SA, Nandi D, Bansal N, Godown J, Zafar F, Rosenthal DN, Lorts A, Jeewa A; ACTION Network. Journal: Pediatr Transplant. 2020 Nov;24(7):e13862. doi: 10.1111/petr.13862. Epub 2020 Sep 28. PMID: 32985785