What is a heart transplant? 

For some children with heart disease, even the most aggressive treatment with medication or conventional cardiac surgery is not enough to restore health and maintain a good quality of life. These children may be considered for heart transplantation.

The most common reasons for heart transplantation in infants, children and young adults include:

• Congenital heart disease that can not be treated with conventional surgery
• A failing circulation correction for congenital heart disease
• Cardiomyopathies or primary disease of the heart muscle
• Persistent life-threatening arrhythmias (abnormal heart rhythms)

Hearts that are transplanted come from deceased organ donors. Organ donors are adults or children who have become critically ill (often due to an accidental injury) and will not live as a result of their illness or injury. If the donor is an adult, he/she may have agreed to be an organ donor before becoming ill. Parents or spouses can also agree to donate a relative's organs. Donors can come from any part of the United States.

CHOP's Heart Failure and Transplant Program has performed more than 200 heart transplants since the inception of our Heart-Lung Transplant Program in 1990, with outcomes among the best.

Learn more about why you should choose CHOP's Heart Failure and Transplant Program.

Preparing for surgery

Once an organ becomes available to your child, you and your child will be immediately called to the hospital. This call can occur at any time, so you should always be prepared to go to the hospital, if needed. Once at the hospital, the child will have some more final blood work and tests to confirm the match of the organ. The child will then go to the operating room.

During surgery

Surgery usually takes from four to six hours. During surgery, your child’s nurse and members of the transplant team will visit you in the waiting room with frequent updates. After surgery, the surgeon and the transplant cardiologist will talk with you, and your child will be taken to the Cardiac Intensive Care Unit (CICU) where he will receive round-the-clock attention from a team of dedicated cardiac critical care medicine specialists.

Recovery and rehabilitation

After surgery, your child will go to the Cardiac Intensive Care Unit (CICU) to be monitored closely. The length of time your child will spend in the CICU will vary based on your child's unique condition. In the CICU, your child:

• Will be in a private room. One parent may sleep overnight in the room.
• May be very sleepy from anesthesia medicines.
• Will have IV tubes, to provide fluids and medications through the veins, and drainage tubes in place.
• Will have a breathing tube connected to a ventilator (respirator). The ventilator will help your child breathe until he wakes up from anesthesia and usually stays in place for a few days. Your child will not be able to talk while the breathing tube is in place.
• Will have a large bandage covering the incision site on your child’s chest and he will have one more chest tubes to drain fluids.
• Will be attached to monitors to keep track of heart rate, blood pressure, breathing rate, and the amount of oxygen in his blood.

After your child is stable, he will be sent to the Cardiac Care Unit (CCU) for continued monitoring. During this time, you will be educated on all aspects of caring for your child once he leaves the Hospital. This will include information about medications, activity, follow-up, diet, and any other specific instructions from your child's transplant team.

The post-transplant period can be challenging for families. As you support your child, you may feel many emotions. In addition to relief and renewed hope for your child's future, you may have new concerns about keeping her healthy. Members of our psychological team can be very helpful before and after discharge, assisting you and your child during this time of transition.

Follow-up care

Your child will have very close follow-up with the transplant team after leaving the Hospital. This will allow for close monitoring of your child and the function of the transplanted heart.

Follow-up visits may include the following:

• Complete physical examination
• Blood work
• Echocardiogram
• Cardiac catheterization
• Continued education for you and your child
• Medication changes

Children who have received a heart transplant will need life-long follow-up with physicians who are specialized in transplant medicine. Keeping appointments with your child's transplant physician, as well as maintaining contact with the transplant team when symptoms occur is vital.

Rejection and infection

After heart transplantation, the major health concern for your child will be rejection of the new heart. Medications will be monitored and adjusted to suppress your child's immune system (and thus prevent rejection) without putting your child at undue risk for infection and other side effects.

Rejection

Rejection is a normal reaction of the body to a foreign object. When a new heart is placed in your child's body, the body sees the transplanted organ as a threat and tries to attack it. The immune system makes antibodies to try to destroy the new organ, not realizing that the transplanted heart is beneficial.

To allow the organ to successfully live in a new body, medications must be given to trick the immune system into accepting the transplant and not thinking it is a foreign object. Your child's transplant team will instruct you on rejection symptoms, and who to call if any of those symptoms occur.

Medications must be given for the rest of the child's life to fight rejection. Each child is unique, and each transplant team has preferences for different medications. Some of the anti-rejection medications most commonly used include:

• Cyclosporine
• Tacrolimus
• Mycophenolate mofetil
• Prednisone
• Azathioprine

Infection

Because anti-rejection medications affect the immune system, children who receive a transplant will be at higher risk for infections. A balance must be maintained between preventing rejection and making your child very susceptible to infection.

Blood tests are performed periodically to measure the amount of medication in the body to ensure your child does not get too much or too little of the medication. White blood cell counts are also an important indicator of how much medication your child needs.

Some of the infections your child will be especially susceptible to include oral yeast infections (thrush), herpes, and respiratory viruses.

Living with transplant

The majority of children who receive new hearts resume a relatively normal and age-appropriate lifestyle. They are able to attend school, own pets, and participate in team sports and other active pursuits. Our team will work with your family to determine the best lifestyle for your child.