Overview

Experts in pediatric heart transplant

Every child deserves the best chance to grow and live an active, healthy life. Our pediatric heart transplant team gives advanced, high-quality care to children who need a ventricular assist device or new heart.

We welcome you to our transplant family and are committed to providing your child and family the education, guidance and support you need. Our team will remain by your side from evaluation through post-transplant care.

Our highly experienced team helps kids with the most complex conditions live their healthiest and most fulfilled life. As a result, our heart transplant program is certified by the United Network for Organ Sharing (UNOS). 

We are nationally recognized for our clinical excellence, compassion and innovation. We are:

  • Ranked as one of the nation’s top heart hospitals by U.S. News & World Report for our American Family Children’s Hospital

  • A Center of Excellence for most insurance networks, a designation that lets you know we provide high-quality care

  • Wisconsin’s only gold-level certified ECMO Center of Excellence

Why choose UW Health

We are experts

UW Health experts successfully treat even the most complex pediatric heart cases. Our heart transplant specialists have decades of experience and stay on the leading edge of ventricular assist device implantation and transplant surgery. In addition, U.S. News & World Report ranks our American Family Children’s Hospital as one of the nation’s top heart hospitals.

Learn more about American Family Children's Hospital

Our research advances transplant care

UW Health is an academic medical center. We are dedicated to research, and our team has a long list of contributions that have changed the lives of transplant patients. Experts in pediatrics, cardiology, heart surgery and heart transplantation make up the UW Health team focused on creating better futures and easier experiences for transplant patients.

Learn more about our transplant research

Caring for your child into adulthood

As your child grows, our UW Health Kids transplant team works closely with you, your child and the adult services team at the UW Health Transplant Center to teach your child how to begin to manage their own care. As they transition to adulthood, this program helps young adults learn how to manage their own medications, understand their lab results and manage their day-to-day health to ensure their transplanted organ continues to work well.

Comprehensive, holistic care

It’s normal to worry when your child doesn’t feel well after a ventricular assist device implant surgery or heart transplant. However, our entire team of pediatric experts is here for your family, whether your child gets a common infection or experiences other complications. From good nutrition to issues with their transplanted organ, we care for your child and help you and your family support their health needs.

What to expect

The heart transplant process for children

Our goal is to give your child a happy, healthy future and we stay by your side every step of the way.

We understand how overwhelming a ventricular assist device surgery or heart transplant can be for you and your child. We know this is an all-consuming process. We are here to help, from your first consultation through follow-up and as your child grows into adulthood.

Here’s what you can expect when your child needs a heart transplant:

Evaluation

You and our heart transplant team meet for a complete evaluation. During this time, your child receives:

  • Imaging and lab tests

  • Mental and emotional health assessments, if age appropriate

  • A physical exam

Together we’ll talk about available support and any financial needs you may have. We encourage you to ask questions so we can address your concerns. Our entire transplant team discusses everything related to your child’s health to decide if a heart transplant is the best option.

Waiting period

Once your child is approved for a heart transplant, we place them on the list for a donor heart. When an organ becomes available, it goes to the child who is the best possible match, as identified by the United Network for Organ Sharing (UNOS).

UNOS determines when your child will receive a donor heart. It may be days or months. In the meantime, we help you stay prepared for heart transplant surgery.

During your wait time, we provide ongoing heart care for your child. Regular appointments with your child help us monitor their heart health. If needed, we provide mechanical circulatory support. Ventricular assist devices and other treatments keep their heart functioning and help them feel better.

Surgery

When your child is matched with a donor organ, we call you right away to come to the hospital. Once you arrive, we admit your child to the pediatric cardiac intensive care unit (PICU).

There, your child receives several tests, including:

  • Blood tests

  • Electrocardiogram (EKG)

  • X-ray or other imaging tests

Your care team also may administer medicines to prevent infection and to help your child’s body accept the donor heart.

When the donor heart is ready for transplantation, we take your child into the operating room. The transplantation procedure includes:

  • Giving your child anesthesia, medicine to get them to sleep

  • Placing your child on a heart-lung machine, which maintains blood flow and breathing for your child during surgery

  • Removing your child’s failing heart

  • Connecting the donor heart to your child’s circulatory system

Planning your stay

The heart transplant process can be a long and difficult journey for families. When your child is added to the wait list, we require that they be within three hours of our hospital at all times and you are all available 24/7. Our team can assist you with emotional support and will provide information about housing options. Many families choose to stay at the Ronald McDonald House, located near the American Family Children’s Hospital. There are other options to consider based on how many people will be relocating with your child and what would make your family most comfortable.

Follow-up care

After surgery, your child spends several days recovering in the ICU. During this time, your child rests comfortably in bed, eating and drinking nutritious meals. They will also receive medicines to prevent infection and rejection of the donor heart.

As your child gets stronger, they continue their recovery in a private room. You can stay in the room with your child.

Our child life specialists provide activities to keep your child engaged while staying in their room.

As part of follow-up care, your care team teaches you about:

  • Precautions to keep your child healthy

  • Routines to follow once you return home

  • Tracking your child’s care

  • What to watch for, such as signs of infection and side effects

  • Your child’s medicines and how and when to administer them

The first few months can be an intense experience for your child and your family. Your child will begin to feel better. You will need time to adjust to being out of the hospital and at home, and you will soon have the opportunity to do things together again. Our team will monitor your child on a weekly basis, and visits will decrease as time passes and progress occurs. We will discuss this at each visit so you can prepare your family.

American Family Children's Hospital

Convenience, comfort, support...Everything transplant kids and families need will be loving provided by our American Family Children's Hospital team.

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Meet our team

Your compassionate transplant team

We specialize in the complex medical and surgical care that children with heart conditions require. Our team includes:

  • Pediatric cardiologists who specialize in heart failure and transplant who manage your child’s heart health before and after transplant

  • Surgeons who specialize in pediatric heart transplant and ventricular assist device implantation

  • Pediatric ICU team members who special in the care of patients with a ventricular assist device or heart transplant

  • Pediatric cardiac anesthesiologists who will closely monitor your child before, during and after surgery and procedures

  • Nurse Practitioners who works closely with physicians to monitor your child’s care

  • Transplant nurse coordinators who guides your family throughout the transplant journey

  • Social workers who helps ease your family’s journey by providing support and resources

  • Psychologists who support your child’s mental health

  • Nutrition experts who monitor your child and educate your family to ensure your child is thriving

  • Physical and occupational therapists will work with your child to rebuild strength

  • Child life specialists who work with your child to help them understand their health situation, tests and procedures. One of our therapy dogs may join in to provide additional comfort

  • Chaplains are available to provide spiritual care and emotional support during your child’s hospital stay

  • Transplant pharmacists who specialize in pediatric transplant medications who will educate your family

  • Financial counselors who guide your family and assist with insurance questions

Patient and support services

Resources for you and your family

We connect you with many resources to help manage your child’s heart transplant experience.

Heart education materials

Frequently asked questions about heart transplant

A heart transplant replaces a heart that is failing with a healthy donor heart. People who suffer from severe heart failure or advanced heart disease of varying causes that do not respond to medicine or surgery are considered for heart transplant. Candidates for transplant should have no other life-limiting medical problems and will need the support of family and friends.

A VAD is a machine that helps the heart pump blood. UW Health can support patients with a Berlin Heart device, a Pedimag or Centrimag pump and the Heartmate3 ventricular assist device.

UW Health has contracts with many insurance providers, Medicare and Wisconsin Medicaid. You need to contact your insurance company to find out your coverage for the costs of your transplant surgery. After contacting your insurance company, if you still have questions, you may call (608) 263-1503 and ask for one of our transplant financial counselors who can assist you.

Listing for heart transplant will take place after thorough testing is done, results are retrieved and evaluated, and it is determined that the benefits outweigh the risks. Your insurance company is then contacted for eligibility of payment. After this is secured, they will be listed.

People who are approved for heart transplant are placed on a waiting list that is managed by the United Network of Organ Sharing (UNOS). This non-profit organization matches organs to patients based on severity of need, blood type, body weight and size, and health.

Heart transplant is a lifelong commitment to regular follow-up care. Patients will have weekly heart biopsies, lab tests and clinic visits throughout their lives.

Heart transplant recipients initially require several medications in the first year after transplant. After the first year, some medications may be stopped, and others decreased. Taking all medications as prescribed is extremely important. The transplant coordinators, pharmacists and staff nurses will teach you how to manage these medications so that everyone is comfortable before your child goes home.

Call (608) 263-6420 to talk with our pediatric heart failure/transplant cardiologists. Patients can also ask their local doctor to contact us to arrange a referral to our pediatric heart transplant program.

Locations

Everything your family needs in one location

We provide pediatric heart transplant services at American Family Children’s Hospital in Madison, Wisconsin, which is connected to University Hospital. This allows for easy access to even more specialists, food options and services.

Smiling child with signing UW Health Kids
UW Health Kids

Our pediatric experts have cared for children for more than 100 years. We focus on each child’s unique needs and offer social and emotional support to help you and your child face even the most complex condition. Our long history includes the creation of medical advances that save lives around the world. Together, we help your child recover and get them back to the activities they love.

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