Pediatric Heart Transplantation:
A Practical Parent Guide

PART 5: THE HEART TRANSPLANTATION

THE OPERATION

A donor heart can become available at any time of the day or night.  We will call or page you to come to the hospital.  Timing is critical so you need to arrive as soon as possible.  We often need to have your child ready to go to the operating room within 1-2 hours upon your arrival at the hospital, so things will happen very quickly. 

Your child will usually be admitted to the cardiac intensive care unit (CICU) and be prepared for surgery.  An EKG, chest x-ray, and blood tests will be done.  You and your child will be seen by the surgeons, anesthesiologists and cardiologists to discuss the upcoming procedure. 

During the time your child is being prepared for the operating room, a surgical team is leaving to obtain the donor heart.  The time of operation is planned to match the team’s arrival back at Children’s Hospital Boston.  The heart cannot live long outside the body so it is important to remove the heart, transport it to our hospital and then transplant the heart within a few hours. 

The transplant operation involves removing the damaged heart from your child’s body and attaching the new heart.  The transplant operation takes about 4-6 hours.  For children with complex congenital heart disease, the operation is more involved because of the abnormal anatomy and the scar tissue from previous operations.  Your child’s specific operation will be described to you.

You can wait in the cardiac ICU waiting room (8th floor) at night or in the main surgical waiting area (3rd floor) during the day.  We will give you progress reports every few hours during the operation.

AFTER THE OPERATION

Care after surgery is very similar to other open-heart surgeries.  Your child will return from the operating room on a breathing machine (ventilator) with a breathing tube in the nose or mouth.  Your child will be on a cardiac monitor, have several IV’s, and other tubes and equipment. Your child will be in a private room in the ICU to protect them from infection.  You will need to wear a gown and wash your hands when you enter the room.  We limit visitors to parents and immediate family in the early postoperative period.  

The average hospital stay is 2-4 weeks.  Half the time is spent in the cardiac ICU and the other half on the cardiac floor.  Patients go to a private room on the cardiac floor when they leave the ICU.  Your child will continue their recovery, be monitored for rejection and other problems, and have their medications adjusted. 

As added support and to facilitate coping during hospitalization, your child will be seen by the inpatient unit’s child life specialist as well as our child psychiatrist.  Our social worker will again make contact with your family.  You will also begin to learn about the medicines and care your child will need at home.  Our goal is to have families feel comfortable and confident with all aspects of their child’s care before discharge home. 

PREPARING FOR DISCHARGE

You (and your child if old enough) will be taught your child’s current medication schedule, proper administration of the medication, monitoring for side effects and monitoring for complications from the transplant.  The doctors, nurses and nurse practitioners will work closely with you.  You will also be given specific patient/parent discharge education information that will be developed specifically to help prepare you and your child for going home. 

DISCHARGE FOLLOW-UP

In the beginning, we will want to see your child frequently for follow-up (once to twice per week).  Generally after a month, this schedule changes to every other week.  Usually around 1 year following transplant, we will see your child every 3-6 months.  We will also coordinate routine medical visits with your child’s primary care physician and local cardiologist (if applicable).

For families that are from a distance (more than 2 hours from Boston), we usually have them stay in the local area for a period of time (6 to 12 weeks) after discharge.  Accommodations and length of stay after discharge will be determined on an individual basis and discussed with you.

Our goal after transplant is to return your child and family to as normal a routine as possible.  This will take time to occur, but this will always remain our goal.  We anticipate that your children will return to school approximately 8 to 12 weeks after surgery.  We will discuss the specifics of transitioning back to school on an individual basis.

 

<< Back to Table of Contents  •  Part 6: Post-Transplant Medication >>