Having heart failure does not mean your child’s heart has "failed." It means your child’s heart cannot pump enough blood to the body.
Heart failure is a serious condition that requires an experienced team performing advanced heart therapies. Our comprehensive Advanced Cardiac Therapies and Heart Transplant Program is dedicated to managing children and adolescents with heart failure. We use the latest treatments, including ventricular assist devices (VADs) and, in certain situations, heart transplantation.
Causes of Heart Failure
Heart failure is usually the result of heart disease. Common causes of heart failure include:
- Cardiomyopathies, which are abnormalities of the heart muscle
- Viral myocarditis, where the heart muscle is not strong enough to pump blood
- Complex congenital heart disease with structural defects, where surgery is either unavailable or unsuccessful
Advanced Cardiac Therapies and Heart Transplant Program at Children’s
The littlest hearts demand the most advanced care. Each child in our Advanced Cardiac Therapies and Heart Transplant Program benefits from the experience and expertise of our heart team, many of whom are nationally renowned heart failure specialists.
We also take special care to monitor your child’s cognitive development during this time. Learn more about our Cardiac Neurodevelopmental Outcome program.
Features of our heart failure program include:
- Personalized care: There is no one-size-fits-all solution when it comes to treatment for heart failure. We work intimately with each family to create an individualized treatment plan that offers your child the best long-term outcome. We are constantly monitoring the effectiveness of the treatments and making changes as necessary. In addition, we offer resources and emotional support to the entire family during this time.
- Dedicated heart failure team: The members of our heart failure team have devoted their careers to understanding, managing, and treating heart failure in children. Your child’s team will consist of:
- Nurses and nurse practitioners
- Respiratory therapists
- Social workers
- Occupational and physical therapists
- Child life specialists
- Full range of treatments: We use the latest advances in heart failure therapy to provide comprehensive, effective care for your child. This includes:
- Ventricular assist devices (VADs)
- Extracorporeal membrane oxygenation (ECMO)
- Home infusions of inotropic drugs (medications that change the force of heart contractions)
- Implanting biventricular pacemakers for cardiac resynchronization therapy, for children with heart failure who also develop arrhythmias
- Using automatic cardioverter-defibrillator devices to treat life threatening arrhythmias. Learn more about cardiac electrophysiology at Children’s.
- WACH Program: As your child ages, we help him or help transition seamlessly to our Washington Adult Congenital Heart (WACH) program, a specialized resources for adults with congenital heart disease.
- Reputable heart transplant program. Our program is one of the Inaugural Vanguard Heart Transplant Centers by the Pediatric Heart Transplant Society (PHTS). This award recognized individual centers for their outstanding contribution to the Pediatric Heart Transplant Society Registry.
Treatments for Heart Failure in Children
We are constantly improving our techniques and pioneering newer and more effective ways to treat children with heart failure. Through VADs and other heart technology, we are able to stabilize children and even reverse some of the effects of heart disease.
Ventricular Assist Devices for Children
A ventricular assist device (VAD) supports your child’s heart function, maintaining blood flow to the organs as your child awaits heart transplantation. VADs, routinely used in adult patients, have only recently been used for pediatric heart failure patients.
We are among a small number of elite heart failure centers in the country that are using VADs for children. Our team continues to pioneer new and more effective VAD techniques. In fact, in the future, VADs may ultimately replace heart transplantation.
Berlin Heart® EXCOR Pediatric Ventricular Assist Device
The Berlin Heart VAD is an external heart pump that helps babies and small children maintain sufficient blood flow. It is the only VAD available for small children and babies with heart failure, providing life-saving support. Our cardiac surgery, cardiology, and cardiac intensive care teams work together to manage the treatment of children using the Berlin Heart. Only 69 patients around the world have had successful removal of their Berlin Hearts, including one at Children’s National.
How the Berlin Heart works:
- We insert cannulas (flexible tubes) in the heart.
- The cannulas extend through the skin, connecting to a small pump outside the body.
- The pump helps maintain blood flow, working with the child’s heart to pump blood.
- The Berlin Heart stabilizes children until a donor heart becomes available. In rare cases, children can recover enough to come off the device and maintain normal blood flow.
- With the Berlin Heart, children do not need to be in the intensive care unit. They can move to a regular hospital room, where their heart team will be able to monitor them closely. Some may even be able to leave the hospital and wait at home until their transplant.
Read Teresa’s story. Teresa was on the Berlin Heart for a year before a heart became available. Thanks to the Berlin Heart, she didn’t need to be placed on a ventilator and could get up and move around during her stay with us.
Extracorporeal Membrane Oxygenation (ECMO)
Children’s is a national leader in extracorporeal membrane oxygenation (ECMO), a heart failure treatment used for infants and babies who are very ill. ECMO is a heart-lung bypass system located outside of the baby’s body.
How ECMO works:
- Doctors perform surgery to attach the ECMO pump to the baby using catheters.
- The ECMO device takes over the work of the baby’s heart and lung. The blood circulates outside of the body, through a machine. The artificial lung puts oxygen into the blood and takes out the carbon dioxide. Then the blood can go back into the baby’s bloodstream.
- During the time your child is on ECMO, the device is allowing your child’s lungs and heart to rest and recover.
- Depending on your child’s condition, he or she may be on ECMO for a few days to a few weeks. When the heart and lungs can work sufficiently on their own, we gradually remove the ECMO.
Heart Transplantation at Children’s
Children’s National has partnered with nearby MedStar Washington Hospital Center, a leading center for heart failure, VAD, and heart transplant therapy. In 2014, we performed six heart transplant operations.
If other treatment options have not been successful, and we determine that your child is a candidate for transplantation, we will recommend a transplant operation as a treatment option. If your child’s heart function is extremely insufficient, we will place your child on a VAD while waiting for a donor heart. Depending on the severity of your child’s condition, he or she may be able to leave the hospital with the VAD and wait at home.
Heart Transplant Team
Caring for children before and after a transplant requires a specialized team of dedicated healthcare professionals. Your child’s team will include:
- Mechanical support nurse practitioner
- Assist device manager
- Dedicated nurse practitioner
- Physicians with expertise in: heart failure, cardiac critical care, and cardiovascular surgery
To make an appointment with our experienced pediatric heart team, please call 202-476-2020.