Evaluation

Your pediatrician or pediatric cardiologist has referred your child to the Pediatric Heart/Heart-Lung Transplant Program for evaluation.

Our job as members of the Pediatric Cardiac Transplant team is to evaluate your child’s medical needs, help you learn about heart and heart-lung transplants and review the appropriateness of transplantation for your child.  Your job is to ask questions and become as well-informed as possible.

The most common questions are: Who needs a transplant?

Not all children will benefit.  This procedure is a last resort when medications and routine surgeries have not helped.  Usually a transplant is recommended when survival without it is expected to be less than one year.

Heart transplants may be indicated for children with certain conditions: dilated cardiomyopathy, myocardial tumors and some forms of complex congenital heart disease, including hypoplastic left heart syndrome, anomalous left coronary artery and Ebstein’s anomaly.

Heart-lung transplants may be indicated for a child with cystic fibrosis, primary pulmonary hypertension or Eisenmenger’s syndrome.  Because of the difficulty of heart-lung transplant surgery, children who have had precious chest surgery generally do not qualify.  This does not apply, however, to heart transplants.

How successful is a transplant?

The survival rates after a heart transplant continue to improve.  Currently, 90 percent of all patients receiving a heart transplant survive one year and 75 percent live five years.  Most heart transplant recipients return to work or school and lead active lives.  Death results from rejection, infection and accelerated coronary artery disease.

For heart-lung transplant recipients, the one-year survival rate is 70 percent and the three-year rate is 50 percent.  Rejection and infection also are the primary causes of death.

We expect these rates to improve.  New medications and therapies, our ability to learn about the body’s response to donor organs and to recognize early signs of rejection are all brightening the outlook for transplant recipients.

Does my child need a heart or heart-lung transplant?  Will he qualify?

We will try to decide this with your help.  We will ask many questions to evaluate your child’s past and present medical status.  When you first visit, please bring this information about your child: Social Security number, medial records, vaccination records, and insurance data.

During your first visit, we will draw blood from your child to begin some basic evaluation.  We will review medical records and perform tests including a physical examination, electrocardiogram (ECG), echocardiogram and chest X-ray.  Other tests may include holter monitoring, exercise testing, cardiac catheterization and heart biopsy.  If your child has had these tests, we will discuss the need to repeat them, if necessary.

Do I have the resources and ability to withstand the rigors of
transplant surgery and the postoperative care?  Does my child?

That’s a hard question to answer.  We look for motivation, compliance with previous medical therapies and strong family support.  We also will discuss financial planning and other arrangements.

After these evaluations, we will review all the information.  This usually takes about one week.  Then we will recommend one of the following courses:

• To provide medication and/or standard surgical treatment
• To accept your child into the transplant program, but defer activation until it is medically indicated, or
• To accept your child into the transplant program and actively seek a donor organ.

For your child

This is likely to be a stressful time for your child.  He may share your emotions, but show them in different and unpredictable ways.  Throughout this process, your child may not feel well and this adds to his fears or frustrations.

How you can help:

• Keep his lifestyle and daily activities as normal as possible.
• Maintain your usual standards of discipline and behavior.
• Tell your child it is okay to talk about difficult thoughts and feelings.  That’s what families are for!
• Explain that he will be going to the hospital to get help for his illness.  For preschoolers, begin this discussion the day before or morning of your scheduled visit.  For school-age children or adolescents, begin as soon as they hear this discussed in your doctor’s office.  Let your child talk to nurses, doctors or social workers, and tell him these people can help him with his feelings, too.
• Avoid overprotecting your child by keeping important information from his.  Children are quick to pick up on non-verbal cues, and often their imaginations “fill in the blanks” if they don’t understand.
• Provide opportunities for young children (under 12) to “play hospital” with dolls or stuffed animals.
• Make a list of questions to ask people at the hospital.
• Plan family activities while waiting for the operation.
• Make a list of things to take to the hospital, such as a favorite toy.
• Take pictures of friends, family or pets to enjoy after the operation.
• Assure your child that you will be with him when he goes for the operation and when he wakes up.  Tell him what your visiting pattern will be so that he can expect you.
• Select books for you and your child about going to the hospital and about illness and discuss them.