Heart transplant FAQs

According to the latest statistics from The United Network for Organ Sharing (UNOS), 320 children were waiting for a heart transplant in the United States as of Feb. 4, 2014, including the following:

• 156 in the newborn to 5 years age group.
• 61 in the 6 to 10 years age group.
• 103 in the 11 to 17 years age group.

Nationally, children account for 8.4 percent of the 4,121 people who are on the heart transplant waiting list.

Hearts that are transplanted come from 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. An adult donor 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.

The United Network for Organ Sharing (UNOS) is responsible for transplant organ distribution in the United States. UNOS oversees the allocation of many different types of transplants, including liver, kidney, pancreas, heart, lung, and cornea.

Some reasons that people lower on the list might be considered before a person at the top include the size of the donor organ and the geographical distance between the donor and the recipient.

Learn about heart sizing and matching innovations pioneered by the Herma Heart Center that help more patients get the transplants they need.

An extensive evaluation must be completed before your child can be placed on the transplant list. Testing includes:

• Blood tests
• Diagnostic tests
• Psychological and social evaluation of the child (if old enough) and the family

Tests are done to gather information that will help determine how urgent it is that your child is placed on the transplant list, as well as ensure the child receives a donor organ that is a good match. These tests include those to analyze the general health of the body, including the child's heart, lung, and kidney function, the child's nutritional status, and the presence of infection.

Blood tests will help improve the chances that the donor organ will not be rejected. These tests may include:

• Your child's blood type - Each person has a specific blood type: type A+, A-, B+, B-, AB+, AB-, O+ or O-. When receiving a transfusion, the blood received must be a compatible type with your child's own or an allergic reaction will occur. The same allergic reaction will occur if the blood contained within a donor organ enters your child's body during a transplant. Allergic reactions can be avoided by matching the blood types of your child and the donor and taking special care before, during and after surgery. Learn about the Herma Heart Center's experience and expertise in performing ABO incompatible heart transplants.
• Kidney, liver, and other vital organ function tests
• Viral studies - These tests determine if your child has antibodies to viruses that may increase the likelihood of rejecting the donor organ, such as cytomegalovirus (CMV).

The diagnostic tests that are performed are extensive, but necessary to understand the complete medical status of your child. The following are some of the other tests that may be performed, although many of the tests are decided on an individual basis:

• Blood tests
• Urine tests
• Echocardiogram - a procedure that evaluates the structure and function of the heart by using sound waves recorded on an electronic sensor that produce a moving picture of the heart and heart valves.
• Electrocardiogram (ECG or EKG) - a test that records the electrical activity of the heart, shows abnormal rhythms (arrhythmias or dysrhythmias) and detects heart muscle damage.
• Cardiac catheterization - a diagnostic procedure in which a small, thin tube (catheter) is guided through a vein or artery into the heart in order to view the heart and blood vessels. An iodine compound (a colorless, liquid dye) is given through the catheter and moving x-ray pictures are made as the dye travels through the heart.
• Heart biopsy - a procedure that takes a small tissue sample of the heart for examination.

The transplant team will consider all information from interviews, your child's medical history, physical examination, and diagnostic tests in determining whether your child can be a candidate for heart transplantation.

After the evaluation and your child has been accepted to have a heart transplant, your child will be placed on the United Network for Organ Sharing (UNOS) list.

The group of specialists involved in the care of children who are undergoing a transplant procedure is often referred to as the "transplant team." Each individual works together to provide the best chance for a successful transplant. The heart transplant team consists of:

• Transplant surgeons - physicians who specialize in transplantation and who will be performing the surgery. The transplant surgeons coordinate all team members.
• Cardiologists - physicians who specialize in the medical evaluation and treatment of heart diseases. They follow your child before the transplant and continue to follow your child after the transplant and after discharge from the hospital.
• Pulmonologists - physicians who specialize in the function and disease of the lungs.
• Transplant nurse coordinator - a nurse who organizes all aspects of care provided to your child before and after the transplant. The nurse coordinator will provide patient education and coordinate the diagnostic testing and follow-up care.
• Social workers - professionals who will provide support to your family and help your family deal with many issues that may arise including lodging and transportation, finances, and legal issues. They can also help coordinate alternative means for school, so that your child does not get behind.
• Dietitians - professionals who will help your child meet his/her nutritional needs before and after the transplant. They will work closely with you and your family.
• Physical therapists - professionals who will help your child become strong and independent with movement and endurance after the transplantation.
• Pastoral care - chaplains who provide spiritual care and support.
• Other team members - several other team members will evaluate your child before transplantation and provide follow-up care, as needed. These include, but are not limited to, the following:
  • Pharmacists.
  • Anesthesiologists.
  • Urologists.
  • Hematologists.
  • Nephrologists.
  • Infectious disease specialists.
  • Respiratory therapists.
  • Lab technicians.
  • Psychologists.
  • Child life specialists.

There is no definite answer to this question. Sometimes, children wait only a few days or weeks before receiving a donor organ. It may also take months or years on the waiting list before a suitable donor organ is available. During this time, your child will have close follow-up with the child's physician and the transplant team. Various support groups are also available to assist you during this waiting time.

A major problem affecting the availability of hearts for transplant is that these organs cannot come from living donors. For example, kidney transplants often come from a living donor; both the person who donated a kidney and the recipient are able to live with just one remaining kidney. Additionally, new techniques are making it possible for some people in need of a liver transplant to receive part of an organ from a living donor; both the recipient and the donor may be able to live successfully with just a segment of a liver. However, an entire heart is needed for a human to live. Neither donor nor recipient can live with only a segment of a heart. Therefore, people in need of a heart transplant must wait for the death of a person who generously decided to share organs.

Availability of donors for heart transplantation is also affected by the size of the child needing the transplant. For instance, an adult donor heart cannot be transplanted into an infant because the infant's chest is simply too small to accommodate the large organ. Children must wait for an appropriately sized organ to become available. However, as of May 15, 2000, new UNOS guidelines were established to give preference to children under 18 on the waiting list before adults whenever a heart from an adolescent donor (ages 11 to 17) becomes available.

Each transplant team has their own specific guidelines regarding waiting on the transplant list and being notified when a donor organ is available. In most instances, you will notified by phone or pager that an organ is available. You will be told to come to the hospital immediately so your child can be prepared for the transplant.

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. The transplant surgery may require several hours, but will vary greatly depending on each individual case. During the surgery, a member of the transplant team will keep you informed on the progress of the transplant.

Post-operative care for heart transplant:

After the surgery, your child will go to the intensive care unit (ICU) to be monitored closely. The length of time your child will spend in the ICU will vary based on your child's unique condition. After your child is stable, your child will be sent to the special unit in the hospital that cares for heart transplant patients. Your child will continue to be monitored closely. You will be educated on all aspects of caring for your child during this time. This will include information about medications, activity, follow-up, diet, and any other specific instructions from your child's transplant team.

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.

The following are the most common signs and symptoms of rejection. However, each child may experience symptoms differently. Symptoms may include:

• Fever
• Decreased urine output or fewer wet diapers than usual
• Elevated heart rate
• Fast breathing rate
• Weight gain
• Fatigue
• Irritability
• Poor appetite

Your child's transplant team will instruct you on who to call immediately if any of these symptoms occur.

What is done to prevent rejection?

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 the following:

• Cyclosporine
• Tacrolimus
• Mycophenolate mofetil
• Prednisone
• Azathioprine

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.

What about infection?

This risk of infection is especially great in the first few months because higher doses of anti-rejection medicines are given during this time. Your child will most likely need to take medications to prevent other infections from occurring. Some of the infections your child will be especially susceptible to include oral yeast infections (thrush), herpes, and respiratory viruses.

Heart transplant follow-up:

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 of rejection occur is vital. Parents (and the recipient, when old enough) are the first line of defense; they must understand and recognize the signs and symptoms of rejection and report them as soon as possible to the transplant team.

Living with a transplant is a life-long process. Medications must be given that trick the immune system so it will not attack the transplanted organ. Other medications must be given to prevent side effects of the anti-rejection medications, such as infection. Frequent visits to and contact with the transplant team are essential. Knowing the symptoms of organ rejection (and watching for them on a daily basis) is critical. When the child becomes old enough, the child will need to learn about anti-rejection medications (what they do and the signs of rejection), so he can eventually care for himself independently.

Every child is unique and every transplant is different. Results continually improve as physicians and scientists learn more about how the body deals with transplanted organs and search for ways to improve transplantation.

For children who have a heart transplant before age 3, experts with our Developmental Follow-up Program will work with you to monitor for potential developmental delays sometimes experienced by children who undergo complex heart procedures early in life. The first of its kind in the nation, the program staff includes a pediatrician specialist in neurodevelopment, nurses, and speech, occupational and physical therapists. This team will partner with you to make sure your child develops to live the healthiest life possible in every way.

After age 4, children work closely with the Herma Heart Center's pediatric psychologist as they begin to transition to grade school life and beyond. Ideally, children will have an annual neurodevelopmental assessment through their adolescent years. Depending on their needs, professionals at Children's are there through adulthood to answer questions and connect families with the resources they need.