Updates

Waiting for a donor heart

The waiting period can take several days, weeks, months, or years. We are unable to predict when we will receive the call for your child’s gift of life. Because of this, the heart transplant coordinator must be able to locate and speak with you 24 hours a day from the time your child is listed for heart transplant. The need for relocation will be discussed on a patient-by-patient basis.

Determining wait list status

After a patient is evaluated and found to be a suitable heart transplant candidate, the patients’ medical information is sent to UNOS (United Network for Organ Sharing) for placement on the national heart transplant waiting list. Donor hearts are allocated to recipients based on several criteria: blood type, tissue typing, body size, age, wait time, and listing priority status. A patient can be listed as 1  of the following statuses:

  • Status 1A must be admitted to the listing hospital and meet one of the following criteria:
    • Requires continuous mechanical ventilation
    • Requires assistance of an intra-aortic balloon pump
    • Has ductal dependent pulmonary or systemic circulation, with a ductal patency maintained by a stent or prostaglandin infusion
    • Has hemodynamically significant congenital heart disease diagnosis, and requires infusion of multiple intravenous inotropes or a high dose single intravenous inotrope
    • May or may not be admitted to the listing hospital and:
      • Requires assistance of a mechanical circulatory support device
      • By exception, the candidate is admitted to the listing hospital and the physician believes the candidate, using acceptable criteria, has an urgency and potential benefit comparable to that of other candidates at the requested status.
  • Status 1B: must meet at least one of the following criteria:
    • Requires infusion of one or more inotropic agents but does not qualify for status 1A
    • Less than one year old at the time of candidate’s initial registration and has a diagnosis of hypertrophic or restrictive cardiomyopathy
    • By exception, the candidate is admitted to the listing hospital and the physician believes the candidate, using acceptable criteria, has an urgency and potential benefit comparable to that of other candidates at the requested status.
  • Status 2:includes all other candidates for heart transplantation.
  • Status 7: The patient is temporarily inactive for a specific reason.
    • These patients do not accrue more time but do not lose the time they have already accrued.

Changes in a patient’s UNOS status are made by the transplant service based on the patient’s clinical condition. If the patient’s medical condition changes, the UNOS status is reassessed and updated.