If your child needs a heart transplant, you’re probably feeling lots of emotions all at once. Fortunately, heart transplants in children offer many kids the chance to live a healthy life once they recover from surgery. Our Nemours pediatric cardiology experts are here to help if your family’s facing a pediatric heart transplant — providing comprehensive, compassionate care every step of the way.
Most children with heart disease can be successfully treated with medicine, surgery, and/or non-surgical procedures. But for some children with end-stage heart disease, pediatric heart transplantation may be the answer. A heart transplant is an operation that replaces a diseased heart with a healthy heart from another person.
Heart transplants in children are only recommended for those who would not be able to live without having their heart replaced. Illnesses that can affect the heart in this way include complex congenital (from birth) heart defects and cardiomyopathy (when the heart muscle is inflamed and doesn’t work as well as it should).
Heart transplants can offer children the chance to live healthy lives once they recover from surgery. At Nemours, if your child needs a heart transplant, 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 at Nemours, we aren’t just concerned about helping your child live — we’re concerned about quality of life, how 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.
For Appointments: (302) 651-4200
- photo ID
- medical and pharmacy insurance cards
- preferred pharmacy name and phone number
- names and dosage of all medications, including over-the-counter medication, your child is currently taking
- guardianship and custody papers, if a legal guardian rather than a parent accompanies your child
- Patient Presents Without Legal Guardian (PDF)
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Note: A parent or legal guardian must be with a child for a first visit.
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If your child needs a heart transplant, you can find one of the country’s finest pediatric heart transplant centers right in your own backyard — 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).
At the Nemours Cardiac Center, our pediatric heart transplant surgeons perform heart transplants in infants, children, and adolescents in our very own pediatric cardiology operating room, used exclusively for pediatric heart surgery. Our pediatric heart transplant program performed the first heart transplant in the state of Delaware. Now, families come from throughout our region, across the country, and around the world for our renowned pediatric cardiology care.
We take our role as the guardians of your child’s heart very seriously. So we’ve filled our pediatric heart transplant team with the very best the profession has to offer. The Nemours Cardiac Center is staffed with a highly skilled team of professionals that includes:
- pediatric cardiologists (children’s heart doctors)
- pediatric cardiothoracic surgeons (who specialize in operating on children’s hearts and chests)
- pediatric cardiac nurses
- pediatric anesthesiologists (who work exclusively in our Cardiac Center)
And our pediatric heart transplant team consists of lots of 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. Offering comprehensive transplant care before, during, and after the surgery, our specialists from cardiology and cardiac surgery lead a team of:
- advanced practice nurses: registered nurses (RNs) who’ve received advanced training beyond nursing school (a college degree and a master’s degree in nursing at a minimum)
- physician assistants (PAs): who, under the supervision of a trained doctor, examine patients, diagnose and treat simple illnesses, order tests and interpret results, provide preventative health care counseling, assist in surgery, and write prescriptions
- social workers: who’s involved with your family from the pre-transplant evaluation through transplantation and post-transplant care, providing emotional support and helping you prepare for each step of the process
- physical therapists and occupational therapists: who encourage specific activities as well as movement to make sure your child is physically strong before leaving the hospital
- child life specialists: child development professionals specially trained to work with kids who are sick and receiving treatment in a hospital setting
- clergy: who can offer spiritual and emotional support
- teachers, teachers’ aides, and volunteers: who can help to educate children at their bedside and in our on-site school
- dietitians/nutritionists: who offer advice and meal plans for kids with specific nutritional needs
- pharmacists: who make sure the medications we dispense for your child are safe, effective, and delivered in a timely manner, 7 days a week, 24 hours a day
Children who need a heart transplant may need 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 we’ll do our best to make the pediatric heart transplantation process as easy as we can for you. If you need to see multiple specialists, we’ll try to schedule them for you on a single day, at one location. We’ll also see to details such as medically assisted transport, insurance, and financial arrangements. And we’ll keep your primary care physician or pediatrician fully up-to-date.
And every member of your child’s Nemours care team (your child’s primary care pediatrician, advance practice nurse, and specialists) will 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.
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 electronic 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 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).
The Nemours Cardiac Center has an active Mechanical Circulatory Support Program that provides Extracorporeal Membrane Oxygenation (or ECMO) — a system that temporarily acts as a patient’s heart and lungs. We also offer Ventricular Assist Devices (VAD) — mechanical pumps that take over the work of the damaged chamber (ventricle) of the heart. This includes the Berlin Heart (a pump device that comes in various sizes to accommodate children).
These assistive devices are used for patients who require “artificial” heart support while waiting for a heart transplant or for their own heart problems to improve.
Our Cardiac Center has its very own pediatric anesthesiologists with the experience and skills required to provide specialized anesthesia for children undergoing heart transplantation. Our anesthesiologists provide anesthesia or deep sedation for heart surgery, cardiac catheterization, and other tests that may be painful or uncomfortable for your child.
Some of the medication we administer is intended to be given before a procedure to produce a relaxed feeling so your child won’t feel so scared or worried. Soon after reaching the location where the procedures are performed, your child will then get further sedation or general anesthesia, which makes for an anxiety- and pain-free experience during the procedure. In the operating room, we give modern anesthetic medications that provide a safe and smooth transition to control pain after the procedure. When it’s appropriate, we use epidural medications (given as an injection in the lower back) to ease pain after chest surgery.
After surgery, your child will spend time in our cardiac intensive care unit (CICU), where we’ll closely and continuously watch your child and give medication for pain and sedation. Our doctors, nurses, respiratory therapists, pharmacists, and other health professionals are equipped with sophisticated technology to monitor your child and adjust treatment on a moment-to-moment basis. And our CICU rooms have full beds so that you can be there, day and night, when your child needs you the most.
After a pediatric heart transplant, children still need to take medications (called “immunosuppressants” or “anti-rejection medications) for the rest of their lives to maintain their best possible health and ensure that their bodies don’t reject the new organ.
We’ll do whatever it takes to help your child recuperate — and get back home — faster. Your child may get 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.
When it’s time to take your child home, we’ll go over everything you need to know about after-care — including home care, school, financial and insurance issues, transportation, medications, as well as signs and symptoms of infection and organ rejection.
Your child also will continue therapy as an outpatient (once sent home from the hospital). We also follow all of our patients very closely post-transplant, both as inpatients in the hospital and as outpatients (either through same-day visits to the hospital or at one of our other Nemours clinics).
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, and 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 whatever it takes 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.