After a Heart Transplant

Receiving a new heart is like a rebirth. Because of this, doctors and parents of transplant recipients often refer to the baby’s transplant birth date in support groups. There are a number of support groups for transplant recipients (see Social Services section of this book). If you don’t already belong to a support group now might be a good time to join.

Now your baby has a “normal heart.” If you want your baby to keep this heart there are some things you must do: you must give the medications to the baby exactly as prescribed at the correct time - missing doses or dosing incorrectly can trigger a rejection episode. You must always be alert to signs of infection and have your baby seen by a pediatrician early if you suspect the baby has an infection. Warning signs include: fever over 100 degrees, cough, irritability, reduced urine output, cyanosis, shortness of breath or difficulty breathing and “flu-like” symptoms.

Your baby may be sent home with a number of medications. Over time some of these medications may be discontinued. Until that time, be aware of any common side effects for these medications. Also, be aware of certain precautions you should take when consuming these medications. For example, prednisone makes the skin more sensitive to sunlight so you should avoid extended exposure to the sun and wear a sunscreen with a high sun protection factor (at least SPF 25) when outside. Do not give your baby any kind of drugs (including over the counter drugs) without calling the pediatrician, cardiologist or transplant coordinator first to make sure it is safe.

Infection is the #1 enemy. Don’t forget that when you take your child for any kind of dental work (cleaning, having cavities filled, etc.) your child must take antibiotics. The mouth is a source of infection. When the mouth is professionally cleaned there is the potential for infection to spread throughout the body. My cardiologist gave me a card from the American Heart Association-American Dental Association which designates the kind of antibiotic to use for specific procedures. Show this card to the dentist before doing any kind of procedure. It would be good for the dentist to make a copy of the card to include in your child’s chart.

Your child needs to continue receiving immunizations for childhood diseases. Transplant babies cannot receive live virus vaccinations. A killed polio vaccine will be given instead. You also need to consult with your pediatrician or transplant coordinator before siblings receive vaccines or if they get chicken pox or measles.

Your baby will need to visit the cardiologist on a regular basis. The baby may have blood tests, EKGs, x-rays, echocardiograms or biopsies scheduled for routine maintenance or to look for signs of rejection. Rejection of the heart does not happen in an instant. You will have time to respond to warning signs. It is important to call your child’s cardiologist or transplant coordinator immediately if you suspect rejection is occurring.

Although all of this may be frightening, we must continue to strive to provide our children with normal lives. We should not be overprotective. We must allow them to play, run and act like normal children. Children with heart defects who are overprotected, who are not allowed to live normally active lives are called “cardiac cripples.” However, having a heart transplant does not cripple a child. Getting a new heart is getting a new lease on life. It is our duty as parents to help our children live their new life to the fullest.

HLHS used to be a fatal disease. Luckily for us, we have some viable options. It may require some superhuman efforts to save our babies, but at least some of them can be saved. We parents will have to make some sacrifices to keep our children healthy, but as they grow older, the sacrifices should decrease. Any effort required to save these precious children is certainly worth it. If nothing else, having a child with this disease makes you realize how fragile life is. It also makes you realize how precious every moment of every day is and how lucky we are to be parents.

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  After a Full or Completion Fontan

Your child may be sent home with a number of medications. Over time some of these medications may be discontinued. Until that time, be aware of any common side effects for these medications. Also, be aware of certain precautions you should take when consuming these medications. Do not give your child any kind of drugs (including over-the-counter drugs) without calling the pediatrician or cardiologist first to make sure it is safe.

Some warning signs you should be aware of include: a high fever, irritability, reduced urine output, cyanosis, shortness of breath, tachypnea, increased sweating (not due to weather) or pallor. You know your child better than anyone, so if you suspect something may be wrong have it checked out early. It is very important that infections do not spread to the lungs.

Infection is the #1 enemy. Don’t forget that when you take your child for any kind of dental work (cleaning, having cavities filled, etc.) your child must take antibiotics. The mouth is a source of infection. When cleaned the potential source of infection spreads throughout the body. My cardiologist gave me a card from the American Heart Association-American Dental Association which designates the kind of antibiotic to use for specific procedures. Show this card to the dentist before beginning any kind of procedure. It would be good for the dentist to make a copy of the card to include in your child’s chart.

Your child needs to continue receiving immunizations for childhood diseases. You might ask your pediatrician about the new chicken pox vaccine (this is a controversial topic right now). This vaccine is available for children 12 months and older. If siblings have not had the chicken pox yet, it may be a good idea for them to also receive the vaccine. You should also talk to your pediatrician about giving your child the flu shot during flu season. Ask if parents and siblings also need the shot.

Your child will need to visit the cardiologist on a regular basis. Routine tests will be conducted including checking his or her SATs, chest x-ray, EKGs and echocardiograms. If problems are detected a cardiac cath may be performed. Some possible complications that the cardiologist may be looking for include: stenosis, coarctation of the aorta (this can reoccur) or problems with the heart’s natural pacemaker.

One last consideration for children who have undergone the Norwood/Fontan procedure is that they cannot live in areas of high altitude (like Colorado). They also cannot snow ski, climb mountains or do any other activity putting them in areas of high altitude. They can go in an airplane; however, special precautions do need to be taken. When you call to make your reservation, make sure the airplane has a pressurized cabin. Many small commuter airplanes do not have pressurized cabins. You must tell the flight attendant as you board that your child has a heart condition. Make sure you know where the oxygen masks are, that they work and you know how to use them. Should you see your child have difficulty breathing or becoming cyanotic during the trip, use the oxygen mask.

Although some of this information may seem frightening, we must continue to strive to provide our children with normal lives. We should not be overprotective. We must allow them to play, run and act like normal children. Children with heart defects who are overprotected, who are not allowed to live normally active lives, are called “cardiac cripples.” However, having a heart surgery does cripple a child. Although our children’s hearts may be unique, they are not handicapped. It is our duty as parents to help our children live their lives to the fullest.

HLHS used to be a fatal disease. Luckily for us, we have some viable options. It may require some superhuman efforts to save our babies, but at least some of them can be saved. We parents will have to make some sacrifices to keep our children healthy, but as they grow older, the sacrifices should decrease. Any effort required to save these precious children is certainly worth it. If nothing else, having a child with this disease makes you realize how fragile life is. It also makes you realize how precious every moment of every day is and how lucky we are to be parents.