Caring for your Child After Heart Transplant

Caring for Your Child at Home

Taking your child home with a new heart is very exciting. However, it can also be very stressful because of all the medicines and new information you must learn.
Following hospital discharge, recipients will be seen by the pediatric transplant cardiologist weekly for 4 weeks, every other week for 2 months, monthly for the remainder of the first year. The second year post transplant, patients will be seen every 3 months. For the remainder of their life they will be seen every 6 months and prn. At any time there is suspicion of transplant related problems they will be seen immediately either in the outpatient clinic or the emergency room.

Laboratory data will be obtained at every office visit and on an as needed basis. Once the patient is on 6 month office visits, we will obtain lab data every 3 months. The transplant coordinator will review lab results not obtained during an office visit or unavailable at the time of the visit with the physician within 48 hours.

EKG and Echocardiograms are done at every office visit or if problems are suspected.

Cardiac Biopsy Schedule

Newborn -8 years of age - Post -op day #14, 6 months and 12 months post transplantation and annually thereafter

9-16 years of age - Post op day #14, 3 months, 6 months, 12 months post transplantation and annually thereafter

>16 years of age - Weekly x , Q 2 weeks x 4, then monthly for the 1st year. 2nd year - every 3 moths. 3rd year - every 6 moths. Annually year 4 and 5.

Post re-transplantation - 1 month, 2 months, 3 months, 6 months, 12 months post transplantation and annually thereafter

Cardiac biopsies are not performed after the patient is 5 years post transplant unless clinically indicated.

Cardiac catheterizations will be performed at 1 year, then ever other year unless clinically indicated. (In lieu of cardiac catheterization, an exercise stress test may be performed per physician discretion).

The cardiac transplant coordinator will be in attendance during each outpatient office visit.

If significant rejection or infection are suspected the patient may be hospitalized. The outpatient visits will become more frequent until the transplant cardiologist feel office visits can be less frequent.

Vital Signs

Many children have high blood pressure after a transplant. Anti-rejection medicine may increase blood pressure. It is vital to give your child his blood pressure medicines as ordered by the transplant doctor.

When you get home, you may be asked to keep a daily record of your child's vital signs.

Check his blood pressure, heart rate and temperature every morning and evening.

You will be given guidelines for normal readings based on your child's age, sex, height and condition.
Call the transplant coordinator any time the reading is not normal for your child. If there is a problem, the coordinator may ask for your child's recent vital signs. Bring the vital signs record with you when you visit the Children's Transplant Clinic.

Daily Weights

If your child is able to sit or stand on a regular bathroom scale, weigh him every morning.

Please try to do this at the same time every day. Weigh your child in the morning after he uses the bathroom, wearing the same amount of clothing each time.
Write the weight in your diary each day.
If your child has gained more than a pound overnight or more than 2 to 3 pounds over a few days, call the transplant office. Your child may be retaining fluid.

Follow-up Medical Care

Your child will need medical care for his transplanted heart for the rest of his life. All transplant care is given at Levine Children's Hospital or at another pediatric transplant center.

Levine Children's Hospital transplant team can provide all of your child's transplant care.
If your child becomes very ill, contact the Levine Children's Hospital heart transplant team so we can determine the best place for your child to receive treatment. In case of an emergency, call 911 or go to the nearest emergency department.
Your child can receive routine care such as immunizations (as long as they are not live virus vaccinations) and ear infections treatment at your child's local pediatrician's office.
If your child is admitted to another hospital, please contact the heart transplant office as soon as possible. We may need to coordinate care with that doctor and hospital.
If your family moves to another state, a transplant coordinator will help you locate another pediatric heart transplant center. We can also help with transferring your child's medical record.

Immunizations (Vaccines)

When possible, your child should receive all needed vaccines before the transplant.
Talk with your child's doctor about the vaccines your child needs.
In general, your child should receive these vaccines before a transplant:
- Diphtheria, pertussis and tetanus (DPT)
- Polio
- Measles, mumps and rubella (MMR)
- Inactivated influenza
- Haemophilus flu Type B (Hib)
- Chicken pox
- Hepatitis A
- Hepatitis B
- Pneumococcus
- Meningococcal disease (meningitis or septicemia)

Infection Prevention

After the transplant, your child cannot receive any vaccines for three months. Your child also cannot receive any live vaccines at any time because his immune system is weak. Your child could get the disease the vaccine is trying to prevent. Live vaccines include the measles, mumps and rubella (MMR), smallpox and chicken pox.
Babies, children and family members who live in the transplanted child's home should receive the inactivated polio vaccine (IPV).
You, your child and family members older than six months should receive a flu shot each year.
If your child is exposed to chicken pox or shingles, call the transplant coordinator right away. Your child might need intravenous medicine to slow down the virus. If your child has not had chicken pox, or a chicken pox vaccine, and is exposed, he may need a varicella zoster immune globulin (VZIG) shot within 72 hours of exposure.

Pediatrician

After the transplant, make an appointment with your local pediatrician or family doctor. This gives your local doctor a chance to check your child and update his chart with new medicines.
Have your local doctor keep your child's vaccine list up-to-date and give a flu shot each year.
This doctor can also treat your child for any routine problems such as ear infections, colds or rashes.

Car Seats

All states have laws that require babies and toddlers to be properly restrained in a car safety seat that is correct for their age and weight. Have all children age 13 or younger ride in the backseat. Use your seat belt to set a good example.

Medical Alert Identification

You may want to buy your child a medical identification (I.D.) bracelet or necklace. In case of a car accident or other emergency, healthcare workers will know your child has had a heart transplant. Find out how to order it at www.medicalert.org or ask your child's doctor or nurse.

Nutrition

Eating healthy food helps your child's body grow and heal. The body needs protein, carbohydrates, fats, vitamins and minerals. The dietitian will check your child's nutritional status. The dietitian will teach your family about the right foods or formulas for your child's special needs. The dietitian will also check your child's diet and growth rate after transplant.

Before a heart transplant, some children may need to be on a low-salt diet. Your child's doctor will decide if a low-salt diet is needed. Many children are very thin and find it hard to eat enough every day. These children need to eat small, frequent meals of high-calorie foods. A list of low-salt foods and high-calorie foods will be given to you.

After the transplant:

Have your child avoid any uncooked or raw foods such as clams, oysters or sushi.
Help your child eat a balanced diet that includes fruits and vegetables.
Stay with a "no added salt" rule.
Avoid chips, sodas, excess fruit juice and other snack foods. They are empty calories and do not provide good nutrition.
Have your child eat more healthful foods by eating them yourself and setting a good example.
Your child's weight will be checked during clinic visits to make sure he is growing well. Our goal is for your child to reach his ideal body weight for his age and height.
Avoid force-feeding your child any food. This may cause your child to dislike eating which may result in malnutrition.
Your child may dislike foods he once enjoyed. He may begin to like new foods. Be sure to support your child during this time of change.
If your baby is bottle-fed, give him formula or milk in his bottle. We do not recommend giving your baby soda and juice in his bottle as it has no nutritional value. Typically children with heart disease need as many nutritional calories as possible, so we do not want them to fill up on juice and soda.

Tube Feedings

Some children need so many calories to grow and heal that it is impossible for them to eat enough during the day.

Tube feedings make it possible for a child to receive extra formula or supplements through a thin, flexible tube that passes through the nose and into the stomach.
Tube feedings can boost calories and improve weight gain. The tube feedings can even be given at night during sleep.
Many parents say that their child has more energy when on tube feedings.
Your child's doctors and nutritionist may advise tube feedings before or after the transplant. The nurses will help you learn more about tube feedings if your child needs them.

Exercise

In the hospital, your child will begin an exercise program, which must be continued after discharge.

For young children, the program consists of play therapy.
For older children and teenagers, a structured exercise program is used.

Exercise helps to:

Reverse the weakness seen with pre-transplant illness.
Offset some of the side effects of the immunosuppressive drugs, such as weight gain, water retention, high blood pressure, elevated cholesterol and blood sugar and weakened bones.
Build confidence and a sense of well-being.

A transplanted heart is described as "denervated." This means the nerves connecting the heart and brain were cut when the old heart was removed. This affects how quickly the new heart can speed up and slow down.

These nerves do not usually grow back. This means that your child might feel very tired if he suddenly ran hard after sitting still. The denervated heart may not increase pumping fast enough to pump enough oxygen-rich blood to the muscles.
"Warm-up" and "cool-down" exercises allow time for the heart rate to adjust to your child's exercise level without causing weakness or fatigue.
Five to 10 minutes of easy play or walking can be used to warm-up or cool-down and prepare for more strenuous activities.

Stop your child's exercises and call your child's transplant coordinator if any of the following occur:

Dizziness
Shortness of breath
Nausea
Being more tired than normal
More sweating than normal

Do not allow your child to do these activities during the first six weeks after transplant:

Heavy lifting, pushing or pulling (including lifting anything more than 5 to 10 pounds)
Use of a regular bicycle
Rough play (including contact sports)
Drive any type of motor vehicle

Also, do not pick your child up by the arms (or allow others to do so)

Keep your child's activity level to only warm-ups and cool-downs if he has:

Infection
Rejection
Fever
A resting heart rate that is more than 20 beats per minute higher than the usual resting heart rate.

Contact your physical therapist with any questions about your child's exercise program.

Sunscreen

Sun exposure happens all year, not just during the summer. The best way to prevent skin damage is to limit the time spent in the sun. Because of side effects with your child's medicine, sunscreen must be used. Choose one with an SPF of 30 or higher. Use it often, even if your child will only be in the sun a short time. To prevent sunburn, your child should:

Wear clothing that protects the skin, such as a hat, long pants and long sleeves
Put sunscreen on exposed skin 30 minutes before going outdoors and put it on again as the package directs. This usually means it needs to be put on every two hours and after playing in the water
Use sunscreen for all children, regardless of skin color

If your child develops new or suspicious-looking areas on his skin, he should see a dermatologist (skin doctor).

Dental

Routine dental visits should begin by age 2 or 3. Dental visits are advised every six months. Your child may need dental checks every three months if his medicine, such as cyclosporine, has caused overgrowth of gum tissue.

Keep your child's teeth, mouth and gums clean. This helps reduce the chance of an infection.
Make sure your child brushes and flosses his teeth twice a day.
Use a soft toothbrush and gently brush up and down. This may help keep his gums from overgrowing.
Your child should see a dentist regularly.
- Please check with a transplant coordinator before sending your child to the dentist for the first time after the transplant.

Hearing Care

Yearly hearing exams are advised. Some of the medicines your child takes or may have received during the transplant can cause hearing loss.

Vision Care

Your child needs regular vision check-ups. Children who are on prednisone should be treated each year by an ophthalmologist (eye doctor).

Gynecology

If your child is female and older than age 18 or is sexually active, she should see a gynecologist (women's health doctor) each year. Immunosuppressive medicines can make your child prone to infections. This is also a good time to discuss birth control options. Unplanned pregnancies can be dangerous to your child and to the fetus.

Ear/Body Piercing and Tattoos

Your child should not get any ear or body piercing or tattoos until you talk to the transplant doctor. This is not a needed medical treatment, and it could put your child at risk for infection.

School and Day Care

Talk to your transplant coordinator about when your child will be ready to return to school, preschool or day care. The transplant coordinator can also advise you of any special plans that may be needed. The goal for all transplant children is to attend school full time. This helps your child keep up with learning, socializing and physical activities. Children's also offers a hospital school program to help with studies when your child is in the hospital. Your transplant coordinator, social worker or hospital school program coordinator can help you with plans for your child's return to school. This may include letters, guidelines and options to help explain why your child may:

Need to return to school part time
Not be able to receive certain vaccines that are needed to enroll in school
Have limits on contact sports
Need home-care school options for when your child is ill or unable to attend school full time

Travel Tips

As your child feels better and returns to a regular schedule, your family may want to travel or take a vacation. Please call your transplant coordinator before travel.

If your family chooses to fly by airplane, take your child's medicines in a purse or carry-on bag. This is helpful in case your checked luggage gets lost in flight.
Bring extra medicine in case of travel delays.
Carry an up-to-date list of all of your child's medicine in case of an emergency.
Have your child wear a medic alert bracelet and carry an identification (I.D.) card.
Include the phone number of the transplant team.
Talk with the transplant coordinator before your child goes to an amusement park. There are certain rides that may not be advised for transplant patients.