Children’s Advanced Heart Therapies
Heart failure in a child, whether in early infancy or late teens, can be a life-threatening condition that arises suddenly and causes stress and uncertainty for your child and family. Heart failure can appear in a newborn baby, a school-age child, or a teen living with undiagnosed heart disease for years.
If your child experiences heart failure, they are in excellent hands with the specialists at the Blalock-Taussig-Thomas Pediatric and Congenital Heart Center.
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What to Expect: Treating Your Child for Pediatric Heart Failure
There are options available for managing heart failure, treating the underlying cause and slowing heart disease progression.
Our goal is to investigate all the available approaches that could improve your child’s health and quality of life, including medication, the use of a ventricular assist device and, when necessary, heart transplantation.
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A ventricular assist device (VAD) supports your child’s heart function, maintaining blood flow to the organs as your child awaits heart transplantation. VADs are increasingly used in pediatric and adolescent patients to address heart failure and as a bridge to transplant.
For older patients, VAD support may allow a patient to go home while awaiting transplantation.
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Our team has experience in addressing pediatric heart failure with the full range of new and effective treatments, including:
- Medication with 24/7 home infusion therapies
- Extracorporeal membrane oxygenation (ECMO)
- Implanted biventricular pacemakers for cardiac resynchronization therapy
- Automatic cardioverter-defibrillator devices to treat life-threatening arrhythmias.
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Preparation for a heart transplant considers all aspects of your child’s life and wellness, and our doctors, nurses, technologists and other experts will guide you and your child through the process, step by step. Your child will be examined by a heart failure cardiologist, nurse practitioner, transplant pharmacist and transplant surgeon who specializes in pediatric heart surgery. We will ask for your child’s immunization and dental records.
A child psychologist will help your child prepare for surgery with age- and development-appropriate support. We will listen to your child’s concerns and provide counseling on the surgical procedure and what happens next.
A social worker will walk you and your family through what to expect in terms of the surgery’s impact on your child’s home life, return to school, participation in sports and other concerns.
A child life specialist will work with your child to help reduce the stress and anxiety related to healthcare and hospitalizations. They will work with you and your child to enhance the emotional and social well-being by promoting effective coping through developmentally appropriate education, preparation and procedural support, and therapeutic play opportunities among many other methods.
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Recovery after heart transplant surgery takes about two to four weeks in the hospital.
The immediate management of heart failure can be intense for children and their families, requiring up many weeks in the hospital after surgery and need for home health care after discharge with frequent cardiology, lab visits. Families are encouraged to plan for home school for 3 months after transplant, to avoid risk of infections after transplant.
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To ensure that your child’s body accepts a donor heart, we treat him or her with immunosuppressive therapy before and after transplant surgery. Suppressing your child’s immune system makes a successful heart transplant possible, as immunosuppression prevents the body from attacking the transplanted heart. Immunosuppression therapy is a lifelong necessity of having an organ transplant.
Because of this, your child might be more vulnerable to infection for after a heart transplant. Our transplant team will review with you what is safe for your child to do as they grow accustomed to their weakened immune system.
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If your child’s or teen’s heart failure can be stabilized with advanced heart therapies, he or she will still require ongoing cardiology care. A donor heart is expected to last about 15-20 years. The continued course of treatment for your child may include regular outpatient cardiology visits, blood work, catheterization procedures, further biopsies and possible surgery. Many patients need to see other pediatric subspecialties, such as:
Regular visits to your primary care provider and dentist are essential in post-transplant care.
Meet Evan
For weeks, Gretchen and Jason Biringer thought their 7-year-old son, Evan, had the flu because the typically energetic boy was lethargic. When Evan’s nailbeds turned purple and he had trouble breathing, they took him to the local emergency room, and he was then transported via helicopter to Johns Hopkins Children’s Center. The family learned that Evan had biventricular heart failure and would need a heart transplant.
Meet Our Experts
Consuela Thompson, M.S., C.P.N.P.-A.C.
"We focus our experience and skill on giving your child the best chance for a healthy and happy life, and remain committed to your child and your family throughout the duration of treatment and recovery.”
William Ravekes, M.D.
Why choose the Blalock-Taussig-Thomas Pediatric and Congenital Heart Center for pediatric heart failure and children’s heart transplant?
The full range of treatments.
We have access to the latest advances in heart failure therapy and skill in providing comprehensive, effective care for your child.
Expertise.
Our experts in heart failure and transplantation have extensive experience treating heart failure in children of all ages.
Individualized care for your child and family.
Our team works closely with each family to create a personalized treatment plan that offers your child the best long-term outcome, along with resources for the entire family.
Emotional support.
Heart failure and heart transplantation in a child calls for care across a range of specialties. Caring and compassionate child life specialists and pediatric psychiatrists nurture children’s emotional and social well-being as they progress through each step of treatment and recovery.
