After a Heart Transplant: How to Care for Your Child

Heart transplantation gave your child a healthy, working heart. You'll need to be extra careful over the next few months. Your health care provider prescribed medicine to keep your child's body from rejecting (not accepting) the new heart. A side effect of the medicine is that your child is more likely to get infections. Sometimes, the area around the surgical site also can become infected.

Care Instructions

About Medicines

  • Give medicine to your child on time and as directed.
  • Store medicine as you have been directed. Some may need to be refrigerated.
  • Gently shake liquid medicine before giving.
  • Call your transplant team before giving your child any new medicines, including prescription medicines and medicines you can buy in the store without a prescription. 
  • Ask the transplant team before giving any vitamins or herbal supplements.
  • Some medicines used to prevent rejection can make skin more sensitive to the sun. Apply sunscreen whenever your child goes outside.
  • Your child should not get live vaccines. Talk with the transplant team about any immunizations ahead of time.
  • On days that your child is having blood work done, do not give the morning dose of anti-rejection medicine (such as tacrolimus and/or mycophenolate) until after blood work is done.
  • Tell the staff at your child's school or child care about the transplant and make sure they can give your child medicines, if needed.

Preventing Infections

  • Make sure that all family members are washing their hands well and often. 
  • Have your child avoid crowds until the transplant team says it's OK.
  • Make sure your child wears a mask in public as directed by the transplant team.
  • Try to keep your child away from people who are sick.
  • Keep any cuts or scratches clean and dry, and watch for signs of infection around the surgical site, such as redness, warmth, or tenderness.

Staying Healthy

  • Keep all follow-up appointments.
  • Check your child's blood pressure and temperature as directed by the transplant team.
  • Give your child a healthy diet, and follow any specific recommendations that the transplant team gave you.
  • Talk with the transplant team about the right level of exercise for your child and any restrictions on sports or physical activity.
  • Let child care providers know signs to look out for that might mean something is wrong, and what to do if they notice any problems.

Call Your Health Care Provider if...

Your child:

  • has a fever of 100.5°F (38.1°C) or higher
  • has blood pressure readings that are higher or lower than the range the transplant team told you is normal for your child
  • has an irregular or fast heartbeat
  • is breathing quickly
  • feels dizzy or lightheaded
  • vomits, feels nauseated, or has diarrhea
  • develops redness, drainage, tenderness, or swelling around the surgical site
  • is peeing less than usual
  • has swelling of any part of the body
  • is crankier, more tired, or behaving differently than usual
  • has new or worsening pain
  • is exposed to chickenpox
  • can't take the transplant medicines or you are unable to get them
  • develops itching, a rash, sores, or blisters

Go to the ER if...

Your child:

  • has trouble breathing
  • seems confused or agitated, or can't speak clearly
  • has a seizure
  • looks blue
  • appears dehydrated; signs include dizziness, drowsiness, a dry or sticky mouth, sunken eyes, crying with few or no tears, or peeing less often (or having fewer wet diapers)

More to Know

What should we know about rejection of the heart? Rejection happens because the body doesn't recognize the new heart and doesn't know that it is helpful. The body's immune system tries to attack it. The risk of rejection is highest in the first few weeks after transplant surgery. But the body never completely accepts the new heart. This means that anti-rejection medicine is taken for life. 

Usually, the amount of anti-rejection medicine taken is reduced as the body gets used to the new heart. Rarely, the body refuses to accept the new organ and another transplant is needed.

What should we do when our family travels? When your family travels:

  • Pack enough medicine for the whole trip, plus a few extra doses.
  • Make sure that any medicines needing refrigeration are kept in a cooler with a frozen ice pack.
  • Do not leave your child's medicines in a hot car.
  • Make sure there is a refrigerator in any hotel rooms you stay in.