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Heart Transplants & Heart Failure
Heart failure happens when the heart can no longer pump enough blood to allow a child to be a child — to play, exercise and grow as kids should. In children, this may occur as the result of congenital (present at birth) heart disease, cardiomyopathies (conditions causing weakness or stiffness within the heart muscle itself) or, occasionally, more rare causes such as myocarditis or arrhythmias. Most children with heart disease can be successfully treated with combinations of medicine or surgical repair of congenital heart defects. But for some with serious heart disease, surgical treatment with an artificial pump or heart transplantation may be the best answer.
At the Nemours Cardiac Center, located within the Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del. (ranked among the nation’s best in pediatric cardiology and pediatric heart surgery by U.S. News & World Report), we offer comprehensive heart failure care — from medical management at home, to mechanical circulatory support (mechanical pumps to assist the pumping of the heart), to heart transplants in children.
Our Pediatric Heart Failure Expertise
If your child has heart failure, you can find one of the country’s finest pediatric heart centers right here at the Nemours Cardiac Center. We offer services and advanced devices unavailable at any other hospital in the area. Our cardiology and heart surgery experts are here to help children with heart failure in both the short- and long-term — providing comprehensive, compassionate care every step of the way. When you put your child’s heart in our hands, we take that responsibility very seriously.
The management of children with heart failure begins with diagnosis. When a child develops the slow progression of symptoms of heart failure, a comprehensive diagnostic work-up may include:
- an echocardiogram
- cardiac catheterization
- exercise testing
- a cardiac MRI
- other tests
Sometimes children develop heart failure rapidly over the course of days, in which case early treatment is the priority.
After children are diagnosed with heart disease, most can be successfully managed with medications to help the heart pump more blood and allow children to return to more normal activity levels. But if medications are no longer enough, a child may need either surgery to implant a mechanical assist device to help the heart pump or heart transplantation. Heart transplants in children replace the poorly functioning heart with a healthy heart from an organ donor — offering many children the chance to live healthy lives.
At the Nemours Cardiac Center, we treat every child with heart failure individually, focusing on how best to get that child home and living a healthy life. In order to do that, we offer a comprehensive array of services including outpatient medical management, medical treatment in an intensive care unit, surgical implantation of mechanical assist devices, and — when necessary — heart transplants in children.
Our dedication to the treatment of heart failure in children was recognized by the Healthcare Accreditation Colloquium — we were only the second children’s hospital in the country to be designated Accredited Heart Failure Institute. The Colloquium honored us with this distinction because of our:
- advanced heart failure care, including ventricular assist devices (VADs) and heart transplants in children
- exceptional support group for children and families with heart failure
- proactive outreach program to educate emergency medical services (EMS) personnel about how to care for these children in emergencies
Colloquium member hospitals are expected to contribute to the body of knowledge about childhood heart failure. At the Nemours Cardiac Center, we are deeply involved in research at the National Institute of Health (with the “Coronary Artery Risk Development in Young Adults,” or “CARDIA” study) and have many ongoing projects evaluating the outcomes of children with heart failure before and after heart transplantation.
Advanced Mechanical Circulatory Support Program
A small but very important number of children, whose hearts are functioning poorly and not responding to medical treatment, will need the help of a specialized machine to support them until their heart either recovers or they receive a new heart.
At the Nemours Cardiac Center, our active Mechanical Circulatory Support Program has expertise and experience with the many types of assistive devices needed by children of different ages and sizes who require “artificial” heart support. This allows us to use the best device for each individual child — improving their chances for an uncomplicated wait for a new donor heart or, in some cases, recovery of their own heart function and removal of the device.
The assistive devices we use in the Mechanical Circulatory Support Program include:
Extracorporeal Membrane Oxygenation (or "ECMO") is a support system that can be rapidly connected to children at their bedside to take the place of the heart and lung function if their own heart is failing. ECMO temporarily acts as a patient’s heart and lungs. ECMO (also known as extracorporeal life support or “ECLS”) is a treatment for serious problems of the heart or lungs (or both). “Extracorporeal” means treatment that takes place outside the body. “Membrane” means a type of artificial lung. “Oxygenation” means supplying oxygen to the blood.
The ECMO system is ideal for urgent situations, but it’s considered temporary support that can be used days to as long as only a few weeks. ECMO can give the lungs and heart time to rest and heal. Children in heart failure who need ECMO can sometimes respond to medications and come off of this support. Others may need to be transitioned to support by another mechanical support device, called a “ventricular assist device” (or “VAD”), until a new heart is available.
The Extracorporeal Life Support Program at duPont Hospital for Children received the Award for Excellence in Life Support by the international Extracorporeal Life Support Organization (“ELSO”) in 2013. This award signifies to families a commitment to our exceptional patient care, and demonstrates to the health care community the highest quality standards, equipment and protocols, and advanced education of all of our staff members.
We’re also the only hospital in the region with an ECMO transport program. Learn More »
For detailed information about ECMO and what you can expect:
“ECMO: A Parent’s Guide to Extracorporeal Membrane Oxygenation Treatment” (PDF) »
This device, also called VAD, is a mechanical pump that takes over the work of, or “assists,” the damaged right or left side of the heart. Sometimes both sides of the heart are assisted (this is called a “biventricular VAD” or “biVAD”).
Unlike ECMO, VADs don’t use an oxygenator (an artificial lung) — they replace the pumping function of the heart. There are a range of VADs available, and the best device for any individual child depends on a variety of factors, including:
- the child’s age and size
- how long the device is expected to be required
- the cause of the child’s heart failure
VADs are often used as a “bridge” to heart transplantation and, in some circumstances, as a bridge to recovery in children with heart failure. Some are designed to be used for days to weeks, whereas others may be in place for a year or more. Depending on the child’s size and the specific VAD used, these devices can enable children to return to “normal” activities.
At the Nemours Cardiac Center, we have a comprehensive VAD program with support options for newborns through young adults. We’ve used the Berlin Heart EXCOR — the first VAD specifically approved for children — since it first became available in the United States. We were also the first center in the region and one of only a handful in the country to use the Heartware HVAD in a child. This device allows patients to go home with a VAD in place. And we’re excited to be one of only 22 hospitals in the country participating in the “PumpKIN trial.” Run by the National Heart, Lung and Blood Institute, this is a trial of a tiny VAD (the size of a AA battery) designed to help newborns with heart failure.
Specialized Expertise in Heart Transplants in Children
The pediatric heart transplant program at the Nemours Cardiac Center performed the very first heart transplant in the state of Delaware. Now, families come from all over the region for our high-quality pediatric cardiology care.
Many people and programs need to be in place to have a successful pediatric heart transplant program, and the Nemours Cardiac Center has brought them all together at duPont Hospital for Children.
We have the expertise to:
- accurately diagnose children who will benefit from heart transplantation
match them with ideal donors
- (most importantly) support them medically and psychologically during the wait for a heart to become available
The Nemours Cardiac Center has a tight-knit team of experienced doctors, nurses, pharmacists, transplant coordinator, mechanical support experts and many, many others who work together for the best results when it comes to heart transplants in children.
After pediatric heart transplants, our team works together to:
- prevent rejection of the new heart
- prevent infection
- help children recover physically and sometimes emotionally from a long illness and hospitalization
Most children who need a heart transplant experience a waiting period. For some, this may be a matter of weeks, while for others it can be months or longer. Our pediatric heart transplant experts use the resources of the entire Nemours Cardiac Center team to provide the best medical support for your child and to ensure the best outcomes.
The needs of a child waiting for a transplant are different, depending on the condition of their heart and overall health. Some may be cared for at home, and others need to be in the hospital receiving IV medications. And a few will be very ill and require support in the cardiac intensive care unit (or “CICU”).
Because everyone in the Nemours Cardiac Center works together all of our transplant team members are available and involved in pediatric heart transplant patients’ care, no matter where they’re located (in the hospital or at home). In addition to the various medical considerations, other important issues that are addressed before heart transplants in children include:
- preparing you, your child and any siblings about what to expect (in age-appropriate terms)
- giving you and your child emotional and psychological support when needed including your family as part of the medical team when making daily decisions that affect your child
When it comes to heart transplants in children, dealing with these things prior to transplant surgery can give families much-needed peace of mind.
Our Nemours Cardiac Center pediatric heart transplant care team brings together many parts that make a highly-skilled whole. To make each transplant successful, our family of experts will help both you and your child at every stage of your pediatric heart transplant journey. Our pediatric cardiothoracic surgeons (who specialize in operating on children’s hearts) and pediatric cardiologists lead a comprehensive team in which every member provides expert care and support for your child and family before, during and after heart transplantation.
Our pediatric heart transplant team also includes:
Pediatric anesthesiologists — doctors with special training and/or experience in providing anesthesia and supporting vital functions for infants and children with heart abnormalities who are having cardiac surgery heart transplants, cardiac testing, other procedures or non-heart surgery. Our pediatric anesthesiologists also provide sedation for procedures and help with pain management.
Pediatric critical care physicians (sometimes called “intensivists”) — physicians that provide intensive care and monitoring of children who may have a failure or malfunction of any of the vital organs, giving medicines and devices to help support children during recovery from an illness or operation, including heart transplants in children.
Transplant coordinator — provides ongoing individualized support to you and your child throughout the pediatric heart transplant process. The coordinator will:
- assists the medical team in evaluating your child for heart transplantation
- helps you with preoperative testing and preparing for surgery
- provides information and support during the wait for a new heart
- assists you and your child after the transplant (with medication management, coordination of follow-up visits, and obtaining helpful community resources)
Physician assistants (PAs) — specially trained individuals who work under the supervision of the Nemours Cardiac Center doctors to deliver care to children who are hospitalized with cardiac problems (including those who are waiting for or have received a pediatric heart transplant).
Advanced practice nurses (APNs) — registered nurses who’ve received advanced training beyond nursing school (a college degree and a master’s degree in nursing at a minimum). APNs work alongside the Nemours Cardiac Center doctors to deliver care to children who are hospitalized with cardiac problems (including those who are waiting for or have received a heart transplant).
Cardiac nurses — registered nurses who undergo extensive training in the specialty of cardiac disease and provide 24-hour care at your child’s bedside.
ECMO or VAD coordinator — a specialized health care professional who's responsible for organizing the personnel and equipment necessary for the smooth day-to-day care of children who need the assistance of a mechanical device (machine) to support their heart and lungs.
ECMO specialist — a nurse, respiratory therapist or perfusionist who’s specially trained to operate and monitor the ECMO machine.
Cardiovascular perfusionist — a specialized health care professional and key member of a cardiac surgery team who manages the heart-lung machine during cardiac surgery including transplantation. The perfusionist, under the supervision of the surgeon, is responsible for managing oxygen delivery and blood flow to children during heart surgery.
Social workers — a care team member with a degree in social work who’s involved with your family at each step of the transplant process, from the pretransplant evaluation through transplantation and posttransplant care, providing emotional support and helping make necessary family life re-arrangements (such as assistance with financial and insurance details).
Physical therapists and occupational therapists — who recommend and encourage specific activities as well as movement to make sure children keep their life skills and stay as physically strong as possible leading up to transplant and during recovery.
Child Life specialists — child development professionals specially trained to help your child and any siblings cope with illness and hospitalization through play, distraction and age-appropriate education.
Clergy (also called “pastoral care” members) — who are available at all times to offer you and your child spiritual and emotional support.
Teachers, teachers’ aides and volunteers — who help to educate school-age children at their bedside and in our on-site school.
Dietitians/nutritionists — specially trained professionals who offer advice and meal plans for children to ensure their best nutritional state before and after heart transplantation.
Pharmacists — who advise the care teams and your family about dosing and administering the multiple medications required by most children who undergo heart transplantation. Pharmacists help identify interactions between medications and side effects that can be harmful or uncomfortable for a child receiving many medications.
In addition to our experts in pediatric heart transplants, kids who need a heart transplant may require the care of other specialists too. Whomever your child needs to see at any point during your family’s transplant journey, at the Nemours Cardiac Center we work together to pool our knowledge, skills, expertise and experience. We function as a group — communicating and collaborating at every step to make the most informed decisions for your child and give children with even the most complicated conditions absolutely optimal care.
And every member of your child’s care team will also have access to your child’s medical information, with just the click of a button. Our award-winning electronic medical record makes it easy for everyone to always stay on the same page about your child’s care — at the same time.
Your Portal to Your Child's Electronic Medical Records
When your child becomes a patient at Nemours, you’ll also have the option of registering for MyNemours, a free, confidential health care management tool that gives you safe, secure, online access to portions of your child’s medical records.
You’ll be able to see:
- lab test and imaging results
- immunization records
- upcoming appointments
- articles from Nemours’ KidsHealth.org specific to your child’s conditions, tests and treatments
All patient information in MyNemours is protected by various state and federal privacy laws and regulations, including the Health Insurance Portability and Accountability Act (HIPAA).
After a pediatric heart transplant, we’ll help your child recuperate — and work toward getting back home to your family. Transplant recipients need to take medications (called “immunosuppressants” or “anti-rejection medications”) for the rest of their lives to maintain the transplanted heart in the best possible health, and to ensure that their bodies don’t reject the new organ. Our team of doctors, nurses, pharmacist and the transplant coordinator will make sure you feel comfortable and confident managing these important medications at home. We’ll work with your local and specialized pharmacies to make sure that your child gets exactly what’s needed.
Your child may receive various types of therapy each day throughout the transplant process. This therapy begins as soon after the transplant as possible and includes physical, occupational and Child Life therapy. Some of these therapies may continue after discharge from the hospital. We’ll make sure that arrangements for these treatments will work for your child and your family.
When it’s time to take your child home, we’ll go over everything you need to know about after-care including:
- home care
- financial and insurance issues
- signs and symptoms of infection and organ rejection
Your child will continue to see members of the transplant team as an outpatient (once sent home from the hospital). We follow all of our patients very closely posttransplant and are continuously available to you by telephone for questions or concerns.
Although our team may know your child’s heart, you know your child best. That’s why we strive to always offer “family-centered care.” That means we want you to be an active participant in the decision making — and we want to make sure you understand exactly what’s going on at all times.
It means we’ll:
- take the time to explain the diagnosis and treatment in understandable terms
- present all of the options
- invite your family’s input for creating the right treatment plan for your child
- encourage you to stay by your child’s side as much as possible
- make sure your questions are answered and your fears and concerns are addressed
Throughout your family’s heart transplant journey, know that at Nemours Cardiac Center we do everything in our power to give your child the very best, most compassionate care possible. We’ll be there to help your child and your family every step of the way.
If your child needs a heart transplant, know that we focus on your child’s quality of life before, during and after a pediatric heart transplant. Of course, we want your child to come through a transplant with flying colors. But we aren’t just concerned about helping your child live — we’re focused on your child feels and functions over the long-term. Our goal — our hope — is that your child will enjoy continued improvement and progress that opens the doors for a long lifetime of possibilities.