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Pediatric Heart Transplant Journey

The Pediatric Heart Transplant Journey

Pre-Transplant Journey

Matthew
Like many children undergoing evaluation for heart or heart-lung transplant surgery, Matthew, 19 months, lives at home with his family.  Matthew was diagnosed with dilated cardiomyopathy shortly after birth.

Preparing for heart transplantation can be very stressful.  Transplantation in children requires keen understanding of the impact of illness on both the patient and family. Johns Hopkins is one of only a few institutions with a dedicated children’s transplant team.  During the general evaluation you and your child will meet with many members of your child's pediatric heart transplant team including: specialty doctors, nurses, surgeons, etc.

The medical evaluation (or "work-up") generally consists of blood-typing, viral screening, an electrocardiogram (EKG), chest X-ray, echocardiogram and cardiac catheterization.  Most work-ups take a few weeks to complete depending on the severity of the illness. A psychosocial evaluation is conducted by the pediatric cardiology social worker and other members of the transplant team. When the work-up is complete, a letter of medical necessity as well as all medical information is sent to the insurance provider to request authorization to place the child on the national, government-regulated waiting list managed by the United Network for Organ Sharing (UNOS).

More detailed information about this part of the heart transplant journey is available in our Parent's Guide to Pediatric Heart and Heart-Lung Transplant book.

Surgery  

When a donor heart or heart-lung is located, you will be telephoned or beeper-paged and given specific instructions on what to do.

When you arrive at the hospital, go directly to the Pediatric Emergency Room (ER).  You and your child will go through several steps very quickly:

  • Meet with members of cardiac surgery, pediatric cardiology, and anesthesia.
  • Sign consent forms.
  • Begin routine preoperative procedures, such as blood-drawing and weight checks.

At the appropriate time, your child will be transported to the operating room.  A parent may accompany the child into the operating room and may stay until the child is asleep.

The surgery can take from 4 to 12 hours, depending on the patient’s medical condition and previous surgeries. After surgery, your child will proceed to the PICU.  Family may visit as soon as the child is "settled in," which typically is within an hour.  The typical length of hospital stay for an uncomplicated heart transplant is 7 to 10 days.

Post-Transplant Journey

After surgery, patients go from the PICU to a special unit with other pediatric patients whose pediatric nurses and specialists from our child life department provide resources and care designed to speed their patients’ recovery.  The transplant team is designed to help patients and families transition into the transplant lifestyle.  Patients will continue to be closely followed in clinic until the age of 21, when they are transferred to the adult cardiolology service.  All patients are required to take anti-rejection medications for life, and most live normal lives.  More detailed information about this part of the heart transplant journey is available in our Parent's Guide to Pediatric Heart and Heart-Lung Transplant Book.


Other links in the Pediatric Heart Transplant site:

Overview
Transplant Team
Information for Healthcare Professionals

 

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