Pediatric Heart Transplantation:
A Practical Parent Guide

PART 3: EVALUATION PRIOR TO TRANSPLANTATION

A thorough evaluation is done if your doctors determine that a heart transplant might be a treatment option for you/or your child.  Consideration for a heart transplant becomes necessary for children who are failing maximal medical therapy and in whom additional cardiac surgery is unlikely to be beneficial. 

The primary goals of our evaluation are:

1. to determine your child’s need for transplantation;
2. to identify any increased risk or contraindications to heart transplantation;
3. to educate you and your family. 

The evaluation generally takes several days to complete.  Determination of whether or not an evaluation needs to occur as an inpatient or outpatient is based on you or your child’s current medical condition. 

The evaluation involves a large series of tests and consultations.  Medical tests are performed to determine the extent of cardiac disease and current cardiac function.  These tests will help us determine if there are any other treatments or medications available that may be considered to help preserve your child’s current cardiac function. 

Our evaluation process is also a time of education.  Throughout the many assessments and consultations that you or your child will experience, we will begin to teach you and your child about heart transplantation.  We want to answer both yours and your child’s questions.  We want to help you begin to plan for the future if your child needs a transplant. 

Your transplant team cardiologist and the heart transplant coordinator are the primary clinicians here at the hospital who will be working with you as you proceed through the evaluation.  They will also be in close communication with the physicians or cardiologists who have been managing you or your child’s care up until this point in time.

HEART FAILURE

Generally the reason for a transplant lies in progressive and untreatable heart failure.  Your child may have a complex congenital heart disease (abnormal heart structures) or cardiomyopathy (abnormal/ineffective heart muscle) that is causing heart failure.  Heart failure is when the heart cannot pump adequately and appropriately (secondary to abnormal structure or weak heart muscle).  Heart failure can progress and cause an increase in symptoms.

The symptoms of heart failure can include fatigue, poor feeding/poor weight gain, abdominal pain, diarrhea, vomiting, shortness of breath, difficulty breathing, or an abnormal heart rhythm.  Symptoms are different in each child and often depend on how long the heart disorder has been present.  Your child’s medical team evaluates your child’s heart failure and identifies any changes that are needed in his/her current medication regimen.  Oftentimes medication doses are increased or changed to the intravenous (by vein) form.  As heart failure progresses your child may require more aggressive assistance and prolonged hospital stays.  When all other medical or surgical options have been explored, your physicians may recommend heart transplantation as a treatment option.

TESTS OF HEART FUNCTION

Besides routine history and physical examinations, your child will undergo a variety of technologically advanced procedures to be sure that heart transplant is the right option for you or your child.  Many of these have already been previously done and will be reviewed by the transplant team, while others may need to done or even re-done.  These tests can include: a standard chest x-ray; an echocardiogram that produces an ultrasound image of the heart; a heart catheterization to assess the heart anatomy and function; an electrocardiogram (EKG) to explore the electrical activity of the heart; or a stress or exercise test where he/she walks on a treadmill while an ECG is recorded.  Less often cardiac computed tomography (CT scan) or magnetic resonance imaging (MRI) may be used in some youngsters.

TESTS OF OTHER BODY SYSTEMS

Tests your child will also likely undergo include extensive blood work as well as ultrasounds, CT scans, and MRI of other body systems.  The blood work will include complete blood counts (CBC), measures of the normal blood chemicals (i.e., sodium, potassium, etc.), measures of kidney and liver function and tests for many common infections (chicken pox, hepatitis, etc).  These tests are necessary to be sure that the other organs will tolerate the heart transplant procedure.  The drugs used after transplant effect many other organs in the body (especially the kidneys, liver, and nervous system), so baseline information regarding the functioning of other body systems is critical.

CONSULTATIONS

You will meet the members of the transplant team during your evaluation.  While you will have contact with many of the physicians, one of the cardiologists will be identified as your child’s primary physician.   In addition, one of the nurse practitioners will become your heart transplant team coordinator.  A nutritionist as well as other hospital specialty physicians will also see your child as indicated by your child’s medical condition.    

It is important to support your child’s coping and adaptation with transplantation, so you and your child will meet the members of our psychosocial staff.  All patients are seen by our social worker and child psychiatrist prior to transplantation.

 

<< Back to Table of Contents • Part 4: Listing & Waiting for Transplantation >>