Text IV. Heart Transplants in Infants and Children

Heart transplantation involves replacing a failing heart with a new one (donor heart). Children undergo heart transplantation for two primary reasons - a congenital heart defect or severe malfunction of the heart muscle. Heart transplantation is considered when there are no other medical or surgical options. The hearts are donated from someone who has suffered an injury resulting in death of his or her brain, but not the other vital organs and whose family has agreed to make the heart and other organs available for donation. Many children who receive heart transplants live years longer than they otherwise would have and have an excellent quality of life.

Children who need heart transplants are placed on a waiting list administered by a national agency called United Network of Organ Sharing (UNOS). The waiting time for a heart can range from days to months (even more than a year) and depends on multiple factors including size, blood type, and whether the patient is hospitalized on intravenous heart medications.

The Pretransplant Work-Up

A transplant team is responsible for assessing whether you are a suitable heart transplant candidate.

Members of the Transplant Team:

· Cardiologist

· Cardiovascular surgeon

· Transplant coordinator

· Social worker

· Dietitian

· Psychiatrist

Specific preoperative tests assess whether any other treatment options exist for you and to ensure that you are physically capable of having a transplant. These tests may include a coronary angiogram (a dye test of the heart arteries), an echocardiogram and a cardiopulmonary study (a stress test using a bicycle or treadmill and a metabolic cart to measure oxygen use). Different blood, urine, and x-ray tests are done to look for other medical problems that may make a transplant impossible; your kidney and liver functions are measured, the presence of infection (such as hepatitis) is determined, and bone density is assessed.

Waiting for Your Heart Transplant

Once on the waiting list, you will receive a pager so that you can be contacted when a heart becomes available. It is important to answer the pager immediately and go to the hospital as soon as possible. When the transplant program notifies you that a heart is available, you are expected to arrive at the hospital within 2 hours of receiving the call. When you arrive, a team of doctors and nurses will prepare you for surgery.

The Heart Transplant

Once the heart has been deemed suitable, you will be taken to the operating room, where surgery will take about 4 hours. During the operation, a bypass machine will be used to give the blood oxygen for use in the rest of your body while the surgeon works on your heart. Most of the old heart is removed and the new one is attached to the incoming and outgoing blood vessels After the surgery, you will be in the cardiovascular intensive care unit. Initially, a ventilator will help you breath, and you will have tubes in your chest to drain fluid around your lungs and heart. Once you wake up and are able to breathe adequately, the ventilator and tubes will be removed. You will have some pain after the surgery and will receive pain medications either intravenously or by mouth. As you recover, you will be transferred to a step-down unit and then to a regular room.

While in hospital, frequent blood tests, including those measuring drug levels, electrolytes, and kidney function are performed. The transplant team will be watching for possible posttransplant complications, including infection and rejection of the heart. You will have several heart biopsies after the transplant to monitor for rejection.

Medications

Many medications are required after the transplant, each with a specific purpose. There are medications to lower rejection (immunosuppressants), medications to treat cholesterol (statins), medications to prevent infection, and sometimes medications to treat high blood pressure and other complications that may occur after transplant. All medications have potential side effects Serious side effects may include an increased risk of infections, diabetes, osteoporosis (thinning of the bones), high blood pressure, kidney disease, and the development of cancer. Avoid direct sunlight and remember to cover up and wear sun block to lower the risk of skin cancer.

Going Home

After leaving hospital, take 1 day at a time and increase your activities slowly over the following 6 to 8 weeks. You should watch for possible signs of infection, including fever, sore throat, shortness of breath, cough, change in sputum, cold sores, flu-like symptoms, or redness, swelling, or drainage from your incision. If any of these develop, you should contact your transplant center as soon as possible. Be careful handling animals and do not clean litter boxes or birdcages because of the risk of infection. Signs of rejection include shortness of breath, weight gain, fever, and fatigue. The only way to diagnose rejection is by heart biopsy. Regular cardiological follow-up with your physician is mandatory.