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Information for Patients
Outpatient Services and Inpatient Units: (302) 651-6660
After 5 p.m. and Weekends:
Cardiac Intensive Care Unit: (302) 651-6644
General Inpatient Unit, 2B: (302) 651-6690
+1 (302) 651-4993
Patient Education & Support
Caring for a child with heart disease can be very stressful for families. At the Nemours Cardiac Center, we strive to make this experience as easy as possible by offering resources and support to help you navigate this journey, better understand your child’s heart condition, and maybe even help you find some peace of mind.
- What to Expect (Tests & Procedures)
- What to Expect (Hospital Stays)
- Home Care Instructions
- Resources & Support
Surgery: What to Expect
When your child needs any kind of surgery or procedure, it’s understandable to be concerned. When it comes to entrusting someone with your child’s heart, you only want the best. Here at the Nemours Cardiac Center at Nemours/Alfred I. duPont Hospital for Children, one of the top-ranked children’s hospitals in the country, our highly skilled team Cardiac Center team will work together to mend your child’s heart as best as we can — and to help you understand what’s going on, every step of the way
Your child’s preoperative (or “pre-op”) visit at the Nemours Cardiac Center will take approximately three to four hours. This will allow the appropriate testing and evaluation before your child’s scheduled procedure. It’s important that you report promptly at the time requested on your appointment letter. Feel free to bring toys, strollers, books, DVDs and snacks to make your day more comfortable. Due to space limitations, we would appreciate it if you could limit the number of people accompanying your child to two or three.
On the day of your Cardiac Center appointment:
- Please report to the Nemours Cardiac Center Outpatient Clinic located on the first floor of the hospital. To facilitate the process, please bring your appointment letter with you.
- After registration, you’ll be greeted by one of the outpatient cardiac nurses who will guide you through your visit.
- We’ll complete tests ordered by your cardiologist and cardiac surgeon which may include, but are not limited to, the following:
- echocardiography (also called an “echo”), a specialized form of ultrasound that builds a picture of your child’s heart using sound waves
- electrocardiogram (“ECG”), which measures the heart’s electrical activity and is completely painless (A series of electrodes are simply fixed to your child’s skin in a few locations with tiny sticky papers. Then the information is transferred to a computer, where it’s stored and printed as a graph.)
- chest X-ray
- blood work
- renal ultrasound of the kidneys, bladder and ureters (thin tubes that carry the urine from the kidneys to the bladder) and brain ultrasound (for infants less than 3 months)
- You’ll meet some of the members of our Cardiac Center team.
Learn More About Your Child’s Cardiac Center Care Team »
- If you’d like, you may also tour the Cardiac Intensive Care Unit (CICU) and the Cardiac Inpatient Unit (the general inpatient area where children stay, which we call “2B”).
After your pre-op day, you’ll receive written instructions regarding your arrival time for admission for surgery, and eating and drinking instructions for the night before surgery. In the event of an unforeseen emergency, your child’s surgical date may be changed. We’ll do our best to anticipate these situations and notify you accordingly.
If your child is ill (e.g., cough, cold, fever) or has been exposed to chickenpox within three weeks of the surgical date, please contact your primary care doctor and cardiologist for advice about keeping or rescheduling the appointment. Also make sure to let us know if there are any dental concerns (so we can inform the anesthesiologist).
On the day of your child’s procedure or surgery, our cardiac social worker will keep you updated.
Telling your child about a heart surgery or cardiac catheterization can cause stress and anxiety for both you and your child. You may wonder when to have the conversation and what to say.
When a parent contacts us at the Cardiac Center and asks for advice, we first try to learn as much as we can about the child — age, past experiences within the healthcare system, temperament and existing coping techniques are all pieces of information we want to hear about in order to create a clear understanding of who your child is. Every child is a unique individual and, therefore, our responses and recommendations are based on what’s appropriate for your child’s age, development level, condition, etc.
Nevertheless, here are some general tips we can share:
- Children need to hear about their hospital stay before they begin their experience with us. They need to process this new information and need time to prepare for the event. Knowing about a procedure and hospitalization ahead of time helps build and maintain trust between you and your child.
- When first telling your child about the surgery or catheterization, start by using a frame of reference (e.g., “Do you remember when we took you to the clinic and they took pictures of your heart? Well, the doctor saw that your heart is not working exactly the way it should. Your heart needs to be fixed so that it works the right way. So you need to have an operation.”).
- Tell your child at the beginning of your explanation who will be staying with him or her. It’s helpful for kids to know that they won’t be going through this experience alone.
- Keep explanations simple and wait for your child to ask questions. This way, you’ll learn what’s important to your child.
- Always be sure that your child is told at a point when you can take the time needed to answer questions and address concerns. (For example, never tell your child about surgery before bedtime or on the way to school.) Be available to answer your child’s questions. Kids need to process the information at their own pace.
- If your child asks a question you can’t answer or you don’t feel comfortable answering, you can respond by saying: “That is a great question! Let’s write it down so we don’t forget it. We can ask a person who works at the hospital.”) Then call us with your child’s question or ask at your next appointment.
- After you and your child finish packing a suitcase, take your child with you to help you pack your suitcase. This is a concrete way of letting your child know that you’re going to the hospital too and will be there the whole time.
There are lots of additional ways you can help your child prepare for hospitalization and/or a procedure. Ask a member of your Cardiac Center care team to connect you with a Child Life specialist who can help you before, during and after your child’s hospital journey.
If you have any questions or concerns, please contact us Monday–Friday, 7:30 a.m. to 4:30 p.m. at (302) 651-6629.
You will usually meet your surgeon and several members of the operating room team prior to your child going into the operating room (or “OR”). They will go over the procedure and answer any questions you might have. Parents and caregivers can accompany their children to the entrance to the operating rooms.
Who Will Take Care of My Child in the OR?
The operating room team has several members, each with important roles to play in caring for your child. The surgeon will be performing the procedure, while the anesthesiologist will ensure that your child is comfortable and receiving adequate support for breathing throughout the operation. But these physicians are only part of the team taking care of your child.
Your child’s surgical care team will also include:
- nurses (who help care for your child, organize the operating room and provide the surgeon with instruments)
- physician assistants (who may assist the heart surgeons with the operation)
- perfusionists (who operate the heart-lung or cardiopulmonary bypass machine)
- respiratory therapists (who help the anesthesiologist with caring for your child)
Parents often ask who will be performing the surgery. At the Nemours Cardiac Center, the surgeon you meet will be the one performing the operation. However, most surgeries take more than two hands, so your child’s surgeon will often be assisted by one of the other surgeons, a physician assistant or a nurse.
What Are the Types of Incisions?
Depending on the type of surgery and the child’s age, the incision used for surgery may be one of three primary types:
Median sternotomy: This is the most common incision required for heart surgery and involves cutting through the breastbone to approach the heart from the front. Although it sounds scary, this is actually one of the least painful surgical incisions (less painful that incisions in the abdomen or the side of the chest) because very little muscle is approached. After surgery, the breastbone (or “sternum”) will usually be put back together with steel wires. These act like a case on the inside to hold the bone together while it heals. Many parents worry that the wires will set off metal detectors, but that doesn’t happen. As the child’s bone grows, it will simply grow around the wires. So, except in extremely rare cases, the wires don’t need to be removed.
Thoracotomy: This is an incision between the ribs in the side or back and is often used to approach the blood vessels around the heart or the lungs. While it causes more discomfort than a median sternotomy, your child’s anesthesiologist will be able to provide medications and treatments (which sometimes include an epidural or spinal anesthesia) to improve pain-control following the operation.
Minimally invasive surgery: Depending on the exact procedure and the child’s age, we can sometimes use techniques to minimize the size of the incisions. For example, some heart surgery procedures (especially atrial septal defect closures) can be performed by only splitting the lower half of the sternum (this is called a “lower hemi-sternotomy”). Lung surgery as well as certain other types of chest surgery in the mediastinum (the space around the heart) can often be done through small incisions using a camera. Your child’s surgeon will decide if these are appropriate for your child.
How Long Will Surgery Take?
The duration of heart surgery procedures will vary depending on the complexity of the surgery and the size of the child, among other factors. Procedures usually take between three to five hours from when children enter the operating room to when they return to the Cardiac Intensive Care Unit (or “CICU”).
Following surgery, children will usually be taken to the CICU. The amount of time they spend there, versus on the regular cardiac inpatient floor (called “2B”), depends on many factors, including:
- the complexity of the operation
- whether the child was at home prior to the surgery
- the presence of other factors such as genetic syndromes, feeding difficulties or breathing abnormalities
Check out these articles from Nemours’ experts at KidsHealth.org to help you and your child know what to expect.
- Anesthesia Basics
- Anesthesia: Preparing Your Child
- Anesthesia Types
- Anesthesia: What to Expect
- Preparing Your Child for Surgery
- What Happens in the Operating Room? (an article for kids)
- What Is Minimally Invasive Surgery?
- When Your Child Needs a Heart Transplant
Who's Who at the Nemours Cardiac Center
Our patient — your child — is always at the center of our care team, but the team can be large and overwhelming. Find out who does what so you can understand what’s happening, every step of the way.
Interested in Participating in Cardiac Research?
The Nemours Cardiac Center at Nemours/Alfred I. duPont Hospital for Children has a long history of conducting research studies to further its mission of improving the care of infants and children with heart disease. In fact, many of the advances that benefit the care of your child today are the direct result of various studies in the past.
Prior to your child’s procedure, you’ll probably be asked to participate in one or more of our research studies. Your participation is strictly voluntary — you should not feel obligated to participate. If you do not want to participate, this will not interfere, in any way, with any current or future care your child receives at the Cardiac Center.
Cardiac Catheterization: What to Expect
Cardiac catheterization is performed by inserting a thin plastic, flexible tube (called a “catheter”) into an artery and vein that lead to the heart. Cardiac catheterization (sometimes also called “heart catheterization”) is done under sedation with local anesthesia or under general anesthesia, depending on your child’s age and condition. A cardiac catheterization is completely painless — our pediatric cardiac anesthesiologists will make sure your child is comfortable throughout the procedure.
Our state-of-the-art cardiac catheterization suite at the Nemours Cardiac Center allows us to offer a special place where our pediatric cardiologists can perform around-the-clock catheterizations in children, using a procedure specifically designed for pediatric cardiac care. Open 24 hours a day, seven days a week, our pediatric cardiac catheterization suite is always available for any child who needs cardiac catheterization services.
Your child’s doctor may recommend a cardiac catheterization to:
- determine if there’s a problem with your child’s heart (called “diagnostic catheterization”)
- possibly repair the problem (known as “interventional catheterization” or sometimes called “therapeutic catheterization”)
- If the procedure is performed while your child is under sedation, some numbing medicine is placed where the catheter will enter.
- The doctor then guides the tube through the blood vessels and into the heart to take measurements of blood flow, pressure and oxygen levels in the heart chambers and large vessels close to the heart. This helps the cardiologist to determine how the heart is functioning and how much blood is flowing through normal and abnormal connections.
- The catheter is guided using a special X-ray study called “fluoroscopy” (and occasionally ultrasound) to help the doctor figure out where the catheter should go. And pictures of the heart chambers and blood vessels are usually taken using a special X-ray dye known as “contrast,” which is injected through the catheter.
During an interventional catheterization, the doctor may perform procedures such as:
- closure of abnormal connections inside and outside the heart
- closure of holes between upper and lower chambers of the heart (such as single or multiple atrial septal defects/ASDs or muscular ventricular septal defects/VSDs)
- closing off an abnormal blood vessel between the aorta and lung artery with a small coil or a special plug (as in patent ductus arteriosus, or PDA)
- balloon angioplasty (in which a small balloon is inflated inside the blood vessel to stretch narrowed arteries and veins)
- balloon valvuloplasty (using a small balloon to expand the opening of heart valves)
- stent implantation (in which a small metal mesh tube is placed within a blood vessel to keep it open)
After catheterization, your child will go to our recovery unit (called the “Post Anesthesia Care Unit,” or “PACU”) for special monitoring before returning to your private room. In many instances, your child may be discharged later the same day or the next morning. Typically, children are back to their normal selves within a few hours. And catheter-based treatments do not require extended recovery periods. Children can usually even return to school after three days.
Before your child’s cardiac catheterization, your child’s doctor will give you a code to watch a video (produced by EmmiKids, an interactive Web-based tool that makes complex medical information easy to understand — even for our youngest patients) about what to expect with a:
- cardiac catheter ablation
- cardiac catheterization (for ASD or PDA)
- cardiac catheterization (stenosis)
Also read this Cardiac Catheterization article from Nemours’ experts at KidsHealth.org.
Extracorporeal Membrane Oxygenation (ECMO): What to Expect
Extracorporeal Membrane Oxygenation (or “ECMO,” for short) is a treatment for serious problems of the heart or lungs (or both). It’s used when the heart or lungs are too sick to work like they should and all other treatments to help them work better have been tried. ECMO can give the lungs and heart time to rest and heal.
This may help to understand what ECMO means:
- “Extracorporeal” means treatment that takes place outside the body.
- “Membrane” means a type of artificial lung.
- “Oxygenation” means supplying oxygen to the blood.
The most common conditions that lead to ECMO treatment include:
- heart problems
- pneumonia (swelling of the lungs)
- persistent pulmonary hypertension (high blood pressure in the arteries that feed the lungs)
- congenital diaphragmatic hernia (part of the stomach bulges through an important breathing muscle called the diaphragm)
A pump inside the ECMO machine moves blood from a patient to the machine and back to the patient through sterile plastic tubes. The ECMO “lung” adds oxygen to the blood and removes carbon dioxide, the waste product of breathing.
Because it has a big job to do, the ECMO machine is large. You may hear people call it “the circuit.” This is because it pumps blood to and from the patient and the machine in a circle. Keep in mind that an actual ECMO machine will probably be larger than you expected.
Cardiac Tests: What to Expect
Our pediatric cardiologists at the Nemours Cardiac Center may recommend or order one or more of the following heart tests before, during and/or after your child's diagnosis or treatment. Whatever kind of testing your child needs, know that we'll explain what will happen during the test and make your child as comfortable as possible.
An extremely helpful and safe imaging tool, this test doesn’t require inserting anything into the body. A pediatric magnetic resonance imaging (also called "MRI") produces strikingly clear, complete pictures of your child’s heart and the blood vessels that connect to the heart. A cardiac MRI allows doctors to analyze the structure and function of the heart, as well as the area surrounding the heart (that are less visible with other diagnostic tools) — specifically the lungs, airways and the esophagus. Because kids must be completely still for MRIs, sedation or anesthesia may be required.
During this test (also called an "exercise test" or a "stress test"), while attached to an EKG machine, your child’s heart rate and rhythm are measured while exercising — for example, riding a stationary bicycle or walking on a treadmill under supervision. If your child has or might have a heart problem or has undergone heart surgery, this test will help you to know which kinds of physical activities are OK and which ones aren’t. It can also pick up abnormalities in the heart’s rhythm that aren’t obvious during rest.
Done in conjunction with an exercise stress test, a myocardial perfusion imaging scan (also called “MPI scan” or “Cardiolite testing”) is used to look at blood flow to the heart muscle during rest and stress. Performed only for certain cardiac diagnoses, this test uses a short-lived radioactive material which, along with computer imaging, will help highlight any blood vessels that may be causing diminished blood flow to your heart. An MPI can take a while — plan to be here for up to five to six hours for the appointment to ensure the best technical quality of the test.
With this test (also called a "CT" or "CAT scan"), by injecting a small amount of contrast agent (or dye) into your child’s circulation (a safe technique), the doctor can get an accurate image, in a matter of seconds, of the important blood vessels attached to the heart and identify any abnormalities (in the heart and other structures in the chest such as the lungs and airways). The latest technology rapidly produces pictures of many layers of the heart. And because CTs don’t take very long at all, some smaller children can be evaluated for potential problems without having to be sedated.
Echocardiography (or “echo”) is our most frequently used imaging tool. It’s a specialized form of ultrasound that builds a picture of your child’s heart (an “echocardiogram”) using sound waves. Echocardiograms can be done anywhere within our facility — often right at your child’s bedside — to make the experience as stress-free and comfortable as possible. Four types of echocardiography are available at the Nemours Cardiac Center:
Transthoracic echocardiography — This test produces images of your child’s heart from the surface of the chest and upper abdomen. Often, these images are so precise that invasive testing (inserting an instrument into the body) isn’t needed. It can be used to diagnose a heart problem and monitor changes in the heart as your child grows. These studies can be performed with ease in both the inpatient and outpatient settings. We also offer 3-D echocardiography, which allows us to visualize the structure of the heart valves and other heart structures in even greater detail.
Transesophageal echocardiography — Also called a “TEE,” this test is performed by inserting a small ultrasound probe into the mouth and through the esophagus (the food pipe that connects the throat with the stomach and lies directly behind the heart). This is often used for older, larger children and gives the best close-up view of some otherwise hidden regions of the heart. It’s extremely useful for obtaining images during surgery and cardiac catheterization.
Fetal echocardiography — This is an in-depth ultrasound study used to view the structure, function and rhythm of a baby’s heart while in utero (still in the mother’s womb) — as early as the 18th week into the pregnancy.
Intravascular echocardiography — Called “ICE,” for short, this test is sometimes done during cardiac catheterization by inserting a thin plastic, flexible tube (called a “catheter”) with a tiny ultrasound probe at the tip through the blood vessels. This ultrasound catheter is advanced to the heart to take a close look at defects and guide any treatment given during the cardiac catheterization.
This test (also called an "EKG" or "ECG") measures the heart’s electrical activity and is completely painless. A series of electrodes (small tabs) are simply fixed to your child’s skin in a few locations with tiny sticky papers. Then the information is transferred to a computer, where it’s stored and printed as a graph.
This is an EKG that’s performed over a long period of time, usually 24 hours or more. Electrodes are connected to the chest and the wires are attached to a portable EKG recorder. Your child will be encouraged to continue normal daily activities, but must be careful to not get the electrodes wet (that means no swimming, showering or activities that cause a lot of sweating).
There are two kinds of Holter monitoring:
- continuous recording (when the EKG is on throughout the entire monitoring period)
- event monitoring (when data is recorded only when the child feels symptoms and then turns the Holter monitor on)
We may use this type of testing to help diagnose a heart rhythm problem. This kind of device is worn by your child and transmits the information from the EKG to your child’s doctor over the telephone.
Get Detailed Info About Cardiac Diagnostic Tests
Check out these detailed articles and videos about select diagnostic tests created by Nemours’ experts at KidsHealth.org:
- CAT Scan: Chest
- ECG (Electrocardiogram)
- Getting a CAT Scan (video)
- Getting an EKG (video)
- Getting an MRI (video)
- Getting an X-Ray (video)
- Magnetic Resonance Imaging (MRI)
Hospital Stays: What to Expect
If your child needs to be admitted (to stay overnight as an “inpatient”) to the Nemours Cardiac Center’s inpatient units or the cardiac intensive care units (CICU), we realize that this is a very stressful time for you, your family and your child. We thank you in advance for entrusting us with your child’s care. We will do everything in our power to minimize potential challenges and to make you as comfortable as possible during your child’s stay.
When your child is admitted to the hospital, please bring:
- your child’s medications in the pharmacy-labeled containers so the staff can review them with you (We will provide all medication while your child is in the hospital. If we don’t carry certain medications, home medications will then be sent to the inpatient pharmacy for review.)
- a list of any herbal or natural products that your child takes
- medical records or outside test or X-ray results
- clothes for your infant or child that are easy to put on and take off (no zippers or snaps)
- comfortable clothes for yourself (e.g., sweatshirts and pants, yoga pants)
- comfort items for your child (a favorite blanket, pillow, music, movie, game or toy)
We provide all linens for you and your child including sheets, towels, blankets and more. To minimize germs, it’s best to bring items that can be washed.
Here are some other suggested items to pack to make your stay as comfortable as possible. Download What to Pack List (PDF) »
If you require any assistance with transportation arrangements to the hospital, please let the Cardiac Center know at the time we are scheduling your appointment.
In addition to the outpatient services office, the Nemours Cardiac Center includes these areas:
- Echo Lab (where we can perform echocardiography, or “echo,” a specialized form of ultrasound that builds a picture of your child’s heart using sound waves)
- Exercise Lab (located in the Cardiac Center’s outpatient services office), where we conduct cardiopulmonary exercise assessments (also called “exercise tests” or “stress tests”) by attaching kids to an EKG machine so that their heart rate and rhythm can be measured while exercising (e.g., riding a stationary bicycle and/or running on a treadmill under supervision)
- Cardiac Catheterization Lab (also called the “Cath Lab”), where we perform diagnostic and treatment (“interventional”) catheterization procedures by inserting a thin plastic, flexible tube (called a “catheter”) into an artery and vein that lead to the heart
- Cardiac Intensive Care Unit (CICU), where children stay when are very sick, need close monitoring, or recently had open-heart or chest (“cardiothoracic”) surgery or a heart transplant
- Cardiac Operating Room (OR), used only for cardiac patients
- 2B inpatient area, which includes:
- Cardiac Step-Down Unit (our regular inpatient care unit)
- Post Anesthesia Care Unit (PACU, also called the “Recovery Unit,” where children go after a surgical or catheterization procedure)
Depending on your child’s diagnosis and treatment, when your child is admitted to stay in the Nemours Cardiac Center’s Cardiac Intensive Care Unit (CICU) or an inpatient unit (on 2B), you’ll be prescribed videos (created by the GetWellNetwork and Nemours’ experts at KidsHealth) that you can watch with your child at the bedside:
- An Introduction to the Intensive Care Unit (ICU)
- What Is a Heart Condition?
- Living With a Child’s Heart Condition
- Your Child’s Cardiac Catheterization
- Your Child’s Recovery From Heart Surgery
Your child’s doctor can also give you an access code to watch the videos at home after your child’s diagnosis or before a procedure.
Legally responsible adults (or “LRA” — usually parents or guardians) and other identified individuals can stay with a child 24 hours a day, seven days a week. Parents will be asked to show a valid photo identification to receive an ID badge when your child is admitted to the inpatient care area.
In partnership with the health care team, a legally responsible adult (LRA) and other individuals identified by the LRA as important to the patient and family may have unlimited access to the patient. Together, this group is referred to as the patient’s “Partners in Care” (or “PiC”).
If an LRA is unavailable and a visitor is requesting access to the patient, the nurse will attempt to contact the LRA prior to granting access. Only the LRA will receive information about their child’s condition.
Upon entering the hospital, extended family and friends will be asked to show valid photo identification, and will be given an ID pass for the day.
A patient’s friends may visit with a parent/legal guardian’s approval (unless it’s during flu season, when visitors must be 10 years or older). We ask that family and friends who come to support patients and their parents/legal guardians work closely with the bedside nurse to participate in care, cooperating to assure safety and healing of the patient.
- Visiting hours: All extended family and friends are required to wear their identification badge and are invited to stay from 8 a.m. to 8 p.m.
- Quiet hours: To ensure mutual respect for all patients and families, the hours between 8 p.m. and 8 a.m. are designated as quiet hours. After 8 p.m. the cardiac units will be secured and all parents and extended family and friends will be required to adhere to the designated quiet time.
If your child develops a cold, fever, cough or other infection prior to admission, please contact the Nemours Cardiac Center so that we can advise you if an alternative arrangement needs to be made.
Teaching hospitals offer patients the highest quality of care with the most up-to-date treatments available. Because duPont Hospital for Children serves as a teaching hospital, your child’s care team includes attending physicians (doctors with all of the required education and certifications) and physicians-in-training.
This means you’ll see more care providers during daily morning “rounds.” This is typically a time for your medical team to go over your child’s care — discussing treatment plans and getting updates from the nursing staff. This is a great time for you to ask questions, address concerns and offer input.
“Family-centered rounds” are a big part of the Nemours commitment to family-centered care. Our family-centered rounds program actively includes our patients and families in team rounds, making you part of the entire care conversation and medical decision-making. Ask your care team how you can get involved.
Cardiac Intensive Care Unit (CICU): What to Expect
The Cardiac Intensive Care Unit (CICU) at the Nemours Cardiac Center currently has 14 beds for patient care. The CICU is considered an “open unit” — parents may enter 24 hours a day.
Parents and family/friends are not allowed to sleep at the bedside while their child is in the CICU. However, for children who are admitted to the CICU, we will make every effort to provide a private room (on 2B) for the two adults who are taking care of the child. If there are no available rooms on 2B, our social worker can help to find options for you to stay in or near the hospital. Unfortunately, due to times of high patient volume, it is possible we will need to move parents out of inpatient rooms while their child continues to recover in the CICU.
Some other things to know:
- While your child is in the CICU, only two people may be at the bedside at any given time. You may trade off if a large group of people comes to see your child, as long as the “two at the bedside” policy is followed.
- Before entering the CICU to see your child, please call the front desk at (302) 651-6644 from the phone located outside the unit (you may also call from your room or personal phone).
- While in the CICU, parents or extended family/friends may be asked to leave the bedside for procedures occurring in the unit.
- We ask that all parents or extended family/friends wash their hands with soap and water at the sinks to the immediate right upon entering the unit. (Please do not use hand sanitizers.)
- TVs and DVD players are available to you. Soft music also can be played for your child, and you’re welcome to bring your child’s favorite movie.
- Please be sure to label all personal belongings.
- Please limit food and beverages to snack items for the patient only (and all beverages should be covered with a lid).
- Research has shown that keeping the environment quiet and calm will help with the healing process.
- Flowers are not permitted in the CICU.
- Cards, gifts and nonlatex balloons are permitted (and can be purchased at the gift shop).
Nursing care is provided 24 hours a day at your child’s bedside. Nurses typically have only one or two patients to care for in the CICU. Nursing shifts are 12 hours.
Parents are allowed to participate during our “change of shift report,” when one shift ends and another begins, and the nurses update each other about each child’s care. We ask families to wait with their questions until the end, because it’s a sensitive time in which a lot of information needs to be passed down from one nurse to another.
Although it’s typical to have a nurse directly at your child’s bedside most of the time, please understand that if the nurse steps away from the bedside, there are monitors throughout the unit so that we can keep track of your child’s status.
Accompanied by a social worker, you will be able to see your child immediately after surgery for a brief time. Please be prepared to see your child with a large tube (called an “endotracheal tube”) taped to the nose or mouth to help with breathing. Other attached lines will monitor blood pressure and deliver medications.
After a brief visit, you’ll be asked to leave the Cardiac Intensive Care Unit (CICU) so the staff may safely and appropriately get your child settled after surgery. This takes approximately one hour. During this first hour, the staff will be sending blood to the lab, taking X-rays and performing routine assessments. After your child is settled, you may return to the CICU, where the bedside nurse will give you an explanation of your child’s condition and the specific equipment around them.
Inpatient Care Units ('2B'): What to Expect
The area of the Nemours Cardiac Center we call “2B” refers to the following units for inpatients (hospitalized children), located on the second floor of the hospital:
- Cardiac Step-Down Unit (the general inpatient care unit)
- Post Anesthesia Care Unit (PACU, where children briefly stay after surgery until they’ve recovered from anesthesia or catheterization)
The cardiac inpatient unit (2B) has 13 private patient rooms, one double room and a three-bed special care/recovery area (the “PACU”). Many types of care are offered in this unit. Children may be admitted to this unit for procedures, studies, device placement, surgery and medical care. Some children will leave within 24 hours; others will spend several weeks on the unit. This is a “telemetry unit,” which means all patients’ heart rhythms are monitored.
Our family-centered care model encourages your active participation in your child’s care (e.g., diapering, feeding, playing). And team members, including doctors, nurse practitioners, physician assistants and nurses will keep you informed every step of the way during our daily rounds.
While on 2B, two primary caregivers may stay with their child 24 hours a day — each room is private and contains a bed for the patient and two beds for adults. For children who are admitted to the CICU, we will make every effort to provide a room on 2B for the two adults who are taking care of the child. If there are no available rooms on 2B, our social worker can help to find options for you to stay in or near the hospital. Unfortunately, due to times of high patient volume, it is possible we will need to move parents out of inpatient rooms while their child continues to recover in the CICU.
Each room on 2B is equipped with a flat-screen TV featuring the GetWellNetwork (which provides education, information and communication at the bedside). Cell phones are permitted, although reliability and connectivity will depend on your service provider. Each room also has a phone for local calls only. Dial “9” and then the local number. Long-distance calls may be charged to your personal phone account or you may use a calling card.
A service at the hospital called “KINfolk” offers laptop computers at no charge for use while in the hospital. You can reach KINFOLK from inside the hospital by dialing 53-5785 or dial direct (302) 765-9550. You may also bring your own computer if you’d like. The hospital has complimentary wireless Internet access.
Laundry facilities are available in the Family Resource Center located on the third floor. Laundry detergent is available at the main nursing station.
Here are some things to keep in mind during your child’s stay:
- Research has shown that keeping noise and stimulation to a minimum optimizes the healing process.
- Please keep the side rails of your child’s bed or crib up at all times.
- Patients are required to remain in their own bed or crib while sleeping (not in bed with parents).
- Each room is equipped with a combination lock safe. We encourage you to use it to store your valuables.
- Please do not administer any home medications to your child. All medications need to be reviewed by the pharmacy and logged into our computer when administered by the nurses.
Nurses will be checking on each room every hour during the day and every two to four hours at night. They will be assessing your child, addressing any needs, and practicing the “three Ps” (pain, potty and patency — this is the working condition of your child’s intravenous catheter).
Nursing shift change occurs from 7–7:30 a.m. and 7–7:30 p.m.
Please tell your nurse if you leave the unit with or without your child. All of our patients wear a security device that will set off an alarm if they leave the building and a telemetry box that will not work if out of range. (The telemetry box allows your child’s vital signs to be displayed on the central monitor in the nurses’ station). Please sign the 2B sign-in/sign-out book located at the 2B work station before you leave and when you return.
A kitchen and appliances are available for patients and their parents. Meals are provided for patients. Parents and family members are responsible for their own meals. You may order an extra tray from the meal service to be delivered to your room for a small charge or purchase one in the cafeteria. All food items must be named and dated if stored in the parent refrigerator located in the kitchen on 2B (there’s limited space, though, so please help by discarding any of your family's expired or uneaten food from the refrigerator and freezer).
Breastfeeding mothers receive a complimentary meal tray for three meals a day. There’s also a refrigerator and freezer in the kitchen specifically for breast milk storage. We also provide you with special breast milk labels that must be cosigned by any nurse on the floor. Please attach these labels to your bottles before they’re stored in the refrigerator or freezer. In addition, electric breast pumps are available for lactating mothers.
While staying on 2B, your child’s pain will be evaluated during nurse assessments. Children on 2B are usually active, alert and awake. Sedation is rarely used, except when your child needs certain procedures. If needed, pain medications that are commonly used are Tylenol®, Motrin® and morphine.
Because many Cardiac Center patients have surgery, management of pain is often an important issue. Although avoidance of all pain is not usually possible, our doctors and nurses are very focused on detecting, preventing and treating any pain that our patients experience. Assessment of pain in infants and younger children is challenging because they may cry or be upset by factors other than pain, such as fear, limited movement or attachment of IVs and other devices to their bodies. Or, they may just generally not be feeling well after surgery or a procedure.
Pain scales are used to measure the amount of pain a person is experiencing and how well a pain medication is working. The scales are designed to accommodate your child's age.
- Older children and teenagers are usually able to rate their pain on a scale of 1 to 10, with 10 indicating severe pain.
- Preschoolers are often able to use a happy or sad face picture scale to rate their pain.
- For babies and very young children, we rely on a scale which includes crying, facial expressions, heart rate and activity level to detect and measure pain.
You may notice that our nurses are regularly using a pain scale when they measure vital signs and after pain medications are given. Feel free to ask the nurse what your child’s pain scale number is and let him or her know if you feel that your child is in pain.
Pain medications are prescribed according to pain severity and means of administration.
The Post Anesthesia Care Unit (PACU) or “Recovery Area” is for patients admitted to the hospital for procedures requiring sedation and anesthesia (e.g., patients who are admitted for cardiac catheterizations, sedated echocardiograms, electrophysiology studies, MRIs, CT scans and general surgical procedures). Patients in the PACU are cared for by registered nurses under the direction of our cardiologists, anesthesiologists, nurse practitioners, physician assistants and surgeons. Patients are carefully monitored and families are allowed to be with their child as soon as possible after procedures.
If your child is admitted to the PACU for a procedure, we ask that you:
- Wash hands when entering the area.
- Limit two people per bedside.
- Keep voices and television volume to a minimum.
- Silence cell phones and step out of the area for prolonged telephone conversations.
- Please do NOT bring food or drinks into the area at any time. Food and drinks will be supplied for patients per doctor’s orders. There is a lounge area outside the entrance to the 2B unit where you can wait during your child’s procedure.
To prepare to go home or for a future surgery, you will feel more comfortable caring for your child by getting involved in the following activities:
- Be at your child’s bedside so you understand the plan of care.
- Be involved with activities of daily living ("ADLs") which include feeding, diapering (if appropriate), bathing, dressing and playing if able.
- Communicate with staff if your child is not acting like him/herself (cranky, irritable, color changes, changes in eating habits, labored breathing or mood changes).
- Be open and available for education about the care of your child — handouts, GetWellNetwork educational videos and individualized care instructions.
If you live outside the area and need a comfortable place to stay during your child’s hospital admission, the Ronald McDonald House of Delaware is conveniently located just across the street from the grounds of Nemours/Alfred I. duPont Hospital for Children, offering our patients and families a safe and affordable home away from home.
Features & Amenities
- 50 private bedrooms and bathrooms
- wheelchair-accessible rooms
- five kitchen stations
- free cooked dinners for families
- fitness center
- computers and wireless Internet access
- teen room
- play rooms
- laundry facilities
- state-of-the-art media room
- outside playground
- activities (such as movie night, arts and crafts for children and adults, and pet therapy with certified pet therapy dogs)
If you need a place to relax, unwind or just take a moment for yourself during your child’s stay at the Nemours Cardiac Center, visit the Family Resource Center and Ronald McDonald Family Room (located on the third floor of the hospital). You can grab a cup of coffee or tea, watch TV, check your email, and even shower while you’re still close to your child’s room.
Thanks to this joint project of duPont Hospital for Children and the Ronald McDonald House of Delaware, you can enjoy 24/7 access to:
- kitchenette with microwave to make snacks or a light meal
- laundry facilities
- telephones (with free long distance)
- fax machine
- free Internet access and wireless service
- low-cost vending machines
- library with books and periodicals from the Auxiliary
- comfortable bathroom and shower facilities
- three quiet sleep rooms (reserve by contacting the social worker assigned
The Family Resource Center also features an education area, available by appointment, where you can learn skills necessary to care for your child’s special medical needs.
When your doctor feels your child is ready to go home we will prepare discharge instructions, which include:
- a follow-up doctor’s appointment
- prescriptions (which can be filled at Nemours or your home pharmacy)
- instructions for the care of your child
- indications to call your cardiologist (including telephone numbers)
Please allow the time necessary to complete the discharge process. You can expect a discharge call from us within 24–48 hours to discuss how your child is doing.
You may also receive a survey in the mail from the hospital. We encourage you to complete and return it. This helps us with our quality initiative to know what we are doing well and what we can approve.
Frequently Asked Questions (FAQs) About Your Cardiac Center Stay
Here are some common questions families often ask about their child’s care and stay in Nemours/Alfred I. duPont Hospital for Children’s Nemours Cardiac Center.
Questions regarding your child’s care during hospitalization at the Nemours Cardiac Center can be asked during family-centered rounds, which take place every morning. On 2B, you’ll be included in daily rounds. In the CICU, you will be included or the attending physician will talk to you after rounds.
Your nurse will ask you if you’re interested in participating in these rounds. If you aren’t able to attend, you’ll be updated when you’re available. If you have questions, you can write them down on the white board in your child’s room.
The Cardiac Center’s social worker is the one who can help you with questions regarding insurance and many other things.
If your child is in a room on 2B, you can stay in the room with your child. If your child is in the CICU, we will try to provide a room for you on 2B. However, when this room is needed for a patient, we have to ask you to vacate the room.
The Ronald McDonald House of Delaware is across the street, and the hospital provides three sleep rooms on the third floor in our Family Resource Center and Ronald McDonald Family Room. Your Cardiac Center social worker can check whether there's availability in either the sleep rooms at the hospital or in the Ronald McDonald House.
If you have a room on 2B, there’s a bathroom in that room. In the CICU, there’s a bathroom for your use next to the kitchen area and in the hallway right outside the CICU.
You can ask the unit clerk to contact Child Life. But if your child is staying on 2B, it's also a good idea to bring some of your child's favorite small toys, activities and crafts from home.
Siblings may visit your child unless it’s during influenza (flu) season when no children under the age of 10 are permitted to visit. (This temporary restriction is to help prevent the spread of the flu — and to give our patients staying at the hospital the best chance of healing.)
Depending on the age of the visiting sibling, it’s important to keep the visit short and to prepare them for what they will see. It’s also important that the visiting sibling is not sick and has not been in contact with other children who are sick. Please arrange the visit with your child’s nurse or the nurse manager in the unit.
Depending on the severity of the illness, you can be included in the care of your child. Please ask your child’s nurse what you can do. Sometimes it might be just holding hands or stroking your child’s head. Also please remember that situations change, so what might be OK to do one day, might not be OK the next. Ask the nurse for an explanation.
We know that you want to comfort and be near your child, especially after a procedure or when your child is very sick. However, if your child has invasive lines, most of the time you will not be able to hold your child because of safety issues. We will consider this, day by day, and are happy to discuss your concerns.
We understand that this might be one of the most difficult requirements in the CICU. The reason is that there is often a delicate balance in your child’s status. Hearing your voice or being touched might alter that balance. We don’t want to stress your child’s heart, since it has just undergone surgery. Again, please ask for an explanation if someone asks you to not touch your child.
You can call at any time. Rounds take place in the morning and may last until the end of the morning. During these rounds, the plan for the day is being discussed. So members of your child's care team won't be available to talk over the phone during rounds.
Sometimes bedside procedures are done in the CICU. This means that the unit turns into an operating room. If your child's room is right next to the patient the procedure is performed on, we will ask you to leave for safety and sterility reasons.
Home Care Instructions
For Families of Children With Congenital Heart Defects
Use this information to help you care for your child after having a cardiac surgery or cardiac catheterization at the Nemours Cardiac Center.
- Let your child rest and play quietly for the first two days after discharge from the hospital. Your child may return to school two days after discharge or as instructed by your child’s physician.
- Your child should not:
- participate in any strenuous activity, such as gym (physical education) class, bike riding, sports or running, as instructed by the cardiac center care team
- lift anything heavy (over 10 pounds), including backpacks until released a Cardiac Center cardiologist says it’s OK
- Give your child a sponge bath using simple soap and water to wash the surgical incision.
- Your child can take a shower, but should avoid direct water flow to surgical incision.
- Your child should not take a tub bath, get in a hot tub, or swim until the surgical incision is healed.
Surgical Incision Care
- Make sure you understand how to care for your child’s surgical site before you leave the hospital. Your cardiac center doctor, nurse practitioner (NP), physician assistant (PA) or nurse will explain everything you need to know about caring for the surgical site.
- Do not put lotions or ointment on surgical incision until it’s well-healed.
- Always wash your hands with soap and water before and after caring for your child’s surgical site.
- Change the dressing over the surgical wound site when it becomes wet or soiled.
- Make sure you understand how to recognize symptoms of surgical site infection before your child is discharged from the hospital.
- fever greater than 101 degrees Fahrenheit
- drainage or pain at the surgical site
- Follow the instructions indicated by your child’s Cardiac Center care team at the time of discharge.
- Ask your health care team if there are any dietary restrictions in relation to your child’s medications.
- You’ll be given information on all of the medications your child should be taking before being discharged from the hospital.
- Make sure you understand how to administer your child’s medication. Your Cardiac Center nurse will review and have you practice before your child is discharged.
- Be sure you have all your child’s prescriptions before leaving the hospital.
- Our social worker or nurse care coordinator can assist you in finding a pharmacy for special medication preparations.
When to Call for Help
Call 911 if your child needs immediate help
— for example, if your child loses consciousness or is:
- having trouble breathing (working hard to breathe, making noises when breathing/grunting)
- not breathing
- pausing when breathing
- pale or blue in color
Call the Cardiac Center at (302) 651-6660 (Monday–Friday) or (302) 651-6690 (nights or weekends) for:
- fever greater than 101 degrees Fahrenheit
- pain that is not controlled by medication
- persistent fussiness or inconsolability
- bleeding, drainage, swelling or redness at the surgical site or chest tube site
- chest pain
- decrease in appetite or feeding
- persistent vomiting or diarrhea
- any other concerns or questions
Remember: It’s important to keep all scheduled follow-up appointments.
- Let your child rest and play quietly for the first two days after the catheterization (“cath”).
- Your child may return to school two days following the procedure or as instructed by your child’s cardiac center physician.
- Your child should not participate in any strenuous activity, such as gym class (physical education), bike riding, sports or running, for two weeks.
- Give your child a sponge bath for the first two days after the procedure.
- Your child may take a shower two days following the procedure.
- Your child should not take a tub baths, get in a hot tub, or swim for two weeks following the procedure.
- If your child returns home on the day of the catheterization, please first offer clear liquids such as water, apple juice, Jell-O®, popsicles or ginger ale.
- If these clear liquids are tolerated and your child feels ready, you may return to your child’s regular diet.
Catheter Site Care
- On the day after the catheterization, gently remove the catheter site dressing and put a Band-Aid® over the site. If your child has stayed overnight in the hospital, the nurse will change the dressing before you go home.
- Put a new Band-Aid® on every day for the next two days.
- Change the Band-Aid® more often if it becomes soiled or wet.
- Watch the catheter site for signs of infection such as:
- redness around the site
- fever greater than 101.5 degrees Fahrenheit
When to Call Your Child’s Cardiac Center Physician
Call your child’s doctor if:
- You notice bleeding from the catheter site. (Apply pressure to the site with your hand, then call right away.)
- Notice any signs of infection (as listed above).
- The leg where the catheterization was performed feels cooler, looks paler or is bluer than the other leg.
- Your child feels tingling or numbness of the leg.
- Your child’s discomfort does not go away after giving prescribed medication.
- You have any other concerns or questions.
Call the Cardiac Center Clinic at (302) 651-6660 (Monday–Friday) or (302) 651-6690 (nights or weekends).
Call 911 if your child needs immediate help
— for example, if your child loses consciousness or is:
- having trouble breathing (working hard to breathe, making noises when breathing/grunting)
- not breathing
- pausing when breathing
- pale or blue in color
If your school-aged child or teen had open heart or chest surgery, these instructions will help protect the sternum (the breastbone) after the operation.
Activities to Avoid
- No using your arms to change positions in bed, get out of bed, stand up or to get into/out of a car.
- No opening heavy doors.
- No lifting more than 10 pounds.
- No driving or bike riding.
- No jungle-gym climbing.
- No wearing backpacks.
- No sleeping or lying on your stomach.
- No sleeping lying on your side for longer than a couple of hours at a time.
- No swimming, hot tubs or tub baths until the incision is healed (sponge baths and showers are allowed).
- No physical education (gym) class or team sports.
Activities to Help
- Always use both arms to lift something. This will keep the pull on the muscles equal from both sides.
- Remind yourself to avoid pushing with your arms during transfers by crossing your arms across your chest.
- Hug a pillow when coughing or sneezing.
Your child will need to follow these precautions for six weeks to allow the sternum to heal. Your Cardiac Center care team will let you know when your child may stop using these precautions.
Educational Resources & Support for Patients & Families
Congenital Heart Diagnoses
Watch these basic animations, created by our Nemours Cardiac Center experts to help both you and your child understand these common congenital heart defects:
- Aortic Stenosis
- Atrial Septal Defects (ASDs)
- Atrioventricular Canal Defect
- Coarctation of the Aorta
- Ebstein’s Anomaly
- Hypoplastic Left Heart Syndrome
- Interrupted Aortic Arch
- Patent Ductus Arteriosus (PDA)
- Pulmonary Artery Sling
- Pulmonary Stenosis
- Tetralogy of Fallot (TOF)
- Total Anomalous Pulmonary Venous Return: Infracardiac
- Total Anomalous Pulmonary Venous Return: Supracardiac
- Transposition of the Great Arteries
- Tricuspid Atresia
- Truncus Arteriosus
- Ventricular Septal Defects (VSDs)
Get additional information about your child’s heart condition — what it is and how it’s treated. Learn More »
How Does the Heart Normally Work?
When your child has a congenital heart defect, there’s usually something wrong with the structure of the heart. In order to understand your child’s condition, it can help to know how the heart should work normally.
Learn More About Normal Cardiac Anatomy »
Nemours’ KidsHealth.org Resources
Check out these articles, animations and videos from the experts at Nemours’ KidsHealth.org — the No. 1 most-visited health site for children in the world:
- Aortic Atresia (A to Z Dictionary)
- Atrial Flutter (A to Z Dictionary)
- Atrial Septal Defect (ASD)
- Atrial Septal Defect (ASD, A to Z Dictionary)
- Cardiomyopathy (A to Z Dictionary)
- Coarctation of the Aorta
- Congenital Heart Defects
- Congenital Heart Defects Special Needs Factsheet (to share with teachers)
- Dysrhythmia (A to Z Dictionary)
- Ebstein’s Anomaly (A to Z Dictionary)
- Endocardial Cushion Defect (A to Z Dictionary)
- Heart Murmurs & Your Child
- Hypoplastic Left Heart Syndrome (HLHS, A to Z Dictionary)
- If Your Child Has a Heart Defect
- Palpitations (A to Z Dictionary)
- Patent Ductus Arteriosus (PDA)
- Pulmonary Atresia (A to Z Dictionary)
- Tachycardia (A to Z Dictionary)
- Tetralogy of Fallot
- Tricuspid Atresia (A to Z Dictionary)
- Ventricular Septal Defect (VSD)
- Ventricular Septal Defect (VSD, A to Z Dictionary)
- Ventricular Tachycardia (A to Z Dictionary)
- Cholesterol & Your Child
- High Blood Pressure (Hypertension)
- How to Read a Nutrition Facts Label (Video)
- Intracranial Hypertension (A to Z Dictionary)
- Losing Weight: Brandon’s Story (Video)
- Nutrition & Fitness Center
- Overweight & Obesity
- Primary Hypertension (A to Z Dictionary)
- Pulmonary Hypertension (A to Z Dictionary)
- Balancing Academics & Serious Illness
- Caring for a Seriously Ill Child
- Caring for Siblings for Seriously Ill Children
- Financial Management During Crisis
- Financial Planning for Kids With Special Needs
- Finding Your Way in the Health Care System
- Giving Teens a Voice in Health Care Decisions
- Going to the Hospital (for Kids)
- Relaxation Techniques for Children With Serious Illness
- Support for Parents of Kids With Special Needs
- Taking Care of You: Support for Caregivers
- What’s It Like to Stay in the Hospital? (for Teens)
- When Your Baby Has a Birth Defect
- When Your Child’s in the Pediatric Intensive Care Unit
- Who’s Who in the Hospital
Coping: Our Patients and Parents Speak
Nemours’ experts at KidsHealth.org (the No. 1 most-visited children’s health website in the world) teamed up with the GetWellNetwork to create these videos about some of our patients and their families dealing with a heart condition.
From the Heart
- American Heart Association: Aims to build healthier lives, free of cardiovascular diseases and stroke.
- American Lung Association: Works to save lives by improving lung health and preventing lung disease through education, advocacy and research.
- American Organ Transplant Association: Helps patients lead happy, productive lives by helping them to obtain and sustain transplantation.
- American Society of Transplantation: Dedicated to improving human life by advancing the field of transplantation.
- Big Hearts to Little Hearts: Committed to supporting research and care for pediatric cardiac patients.
- Cardiac Arrhythmias Research and Education Foundation: Formulates, promotes and leads initiatives to prevent sudden cardiac death due to acquired and inherited heart rhythm disorders.
- CHARGE Syndrome Foundation: Provides support to individuals with and families of children with CHARGE syndrome (a complex genetic syndrome that involves multiple birth defects).
- Children and Clinical Studies: Gives information about the importance of clinical studies in children, what families need to know to make an informed decision, and how to participate.
- Children's Cardiomyopathy Foundation: Dedicated to accelerating the search for cures while improving diagnosis, treatment and quality of life for children affected by cardiomyopathy.
- Children’s Heart Foundation: Funds the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects.
- Children's Organ Transplant Association: Helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support.
- Congenital Heart Information Network: Provides reliable information, advocacy, support services, financial assistance and resources to people affected by congenital heart defects.
- Donate Life America: Committed to increasing organ, eye and tissue donation.
- National Foundation for Transplants: Offers fundraising assistance for organ and tissue transplant patients across the country.
- National Heart Lung and Blood Institute – Condition Index: Provides science-based, easy-to-understand information related to heart, lung and blood diseases and conditions.
- Pediatric Heart Network: A group of U.S. and Canadian hospitals that conducts research studies in children with congenital or acquired heart disease.
- Transplant Recipients International Organization, Inc.: Committed to improving the quality of life of transplant candidates, recipients, their families and the families of organ and tissue donors.
- The United Network for Organ Sharing (UNOS): Manages the nation’s organ transplant system under contract with the federal government.
- U.S. Department of Health & Human Services: U.S. government-provided information on organ and tissue donation and transplantation.
Parent Support Groups
- Cardiac Family Advisory Council: A diverse group of parents, families and Nemours Associates dedicated to improving the quality of care for our patients and families. If you’re interested in participating in the work of the Family Advisory Council, please call the Director of Cardiac Nursing at (302) 651-5730.
- Little Hearts, Inc.: Provides support, education, resources, networking and hope to families affected by congenital heart defects.
- Pulmonary Hypertension Association: Aims to provide hope for the pulmonary hypertension community through support, education, advocacy and awareness.
- Sisters by Heart: Parent support group for families of children with hypoplastic left heart syndrome