Pediatric Heart Transplantation:
A Practical Parent Guide

PART 4: LISTING AND WAITING FOR TRANSPLANTATION

WHEN THE EVALUATION IS COMPLETE

At the conclusion of the evaluation, the transplant team cardiologist and heart transplant coordinator will sit down with you to inform you of the results.  They will also communicate these findings to your primary physician and cardiologist. 

Generally, there are three possible recommendations:  1) the evaluation has identified factors that make a heart transplant contraindicated or not possible; 2) the evaluation has identified that there are other treatments or medications available that should be considered prior to heart transplant; or 3) the evaluation has identified that heart transplant is a treatment option.  In all of these situations, the heart transplant team will work with you and your child’s physicians to develop a coordinated care plan. 

LISTING FOR TRANSPLANTATION

Once you and your doctors decide that heart transplant is the most appropriate treatment option for your child, your child will be “listed” on a national computer system as a potential transplant recipient.  The national system matches organ donors by weight and blood type with children waiting for a new heart.  The wait can be from days to months.  You will be given a beeper to wear at home so we can reach you at all times and transportation arrangements will be made to get you to the hospital if necessary.  We have had patients wait as little as one week while others have waited over one year.  The average wait is 60 days.

The goal during listing and waiting is to preserve your child’s current cardiac function and to ensure the best quality of life possible.  We will work closely with you and your child during the waiting time.  Your child will have frequent visits to the hospital for periodic check-ups.  Your child may need periodic hospitalizations for changes in his/her medications.  It is also possible that your child will need to wait in the hospital where they can receive intravenous (by vein) medications to support the heart’s functioning.

Overall, children and adolescents have done well emotionally with this waiting period.  There is no question that it is stressful to wait with uncertainty as to when the transplant may occur.  Parents have certainly voiced the same stress as well as the impact of waiting for another child to die so that their child may live.  The heart transplant team stands ready to support your child and yourself during this waiting period.  Our social worker and child psychiatrist are also available and will check in with your family.

The United Network for Organ Sharing (UNOS) requires all transplant centers to inform all patients listed for transplant that listing at more than one institution for an organ is allowable.  For more information on this topic, contact UNOS directly at www.unos.org or 1-888-TXINFO.  Families interested in this will need to investigate and coordinate this on their own.

 

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