Heart Transplant Program

Primary Children's Heart Center Transplant Program was established in February of 1988 as the pediatric arm of the Utah Transplantation Affiliated Hospitals Cardiac Transplant Program (U.T.A.H. Cardiac Transplant Program). Our goal is to provide children with end-stage heart disease an opportunity to meet two basic needs:

To be active participating members of their family and community.
To grow and develop, both emotionally and physically, with minimal, if any, limitation or restriction from heart disease.

The U.T.A.H. Cardiac Transplant Program is a consortium of transplant centers comprised of Intermountain Medical Center, George E. Wahlen VA Medical Center, University of Utah Health Care, and Primary Children’s Hospital. Since 1985, the U.T.A.H. Cardiac Transplant Program has performed over 1,000 heart transplants at participating facilities.

The Primary Children's Heart Center transplant team is a multidisciplinary team comprised of thoracic surgeons, cardiologists, pediatricians, nurse practitioners, nurse coordinators, social workers, pharmacists, dietitians, and financial counselors. We also collaborate with many other pediatric subspecialists, clinical specialists, and support services as indicated.

Multidisciplinary Care

Our team is led by nationally recognized experts with more than 75 years of combined pediatric heart transplant experience. The transplant team includes pediatric cardiologist, heart transplant surgeons, registered nurses, social workers, transplant assistants and coordinators, pharmacist, dietitian, and other support staff.

Excellent Outcomes

Our program features a greater than 95% 3-year survival rate, with an average of 10 heart transplants each year. The team has also completed several multi-organ transplants including combined heart-liver and combined heart-kidney. Through collecting data and tracking outcomes, we can continually assess, analyze and improve our care.

Patient & Family Centered Care

We understand how important it is to support the entire family when a child has serious health issues. In addition to focusing on excellent care, we have dedicated significant resources to developing family support services. Our team includes physicians, therapists, child life specialists, teachers, and volunteers to engage patients and family members with therapeutic activities, positive distraction, and social support. Learn more about our patient and family support services.

Pediatric to Adult Transition Program

Adolescents and young adults are most vulnerable during transfer from the pediatric setting to adult care. Children who received a transplant at a very young age may not have a good understanding of their chronic condition and may also be more dependent upon the adults in their lives for their care.

The goal of our transition program is to prepare these adolescents and young adults and parents/guardians for a successful transfer to adult care through a comprehensive patient-centered and developmentally appropriate transition program. Completing a transition program should enable our patients to achieve self-efficacy and optimize their independence to provide self-care to the best of their ability.

This is important because of the very high risk of organ loss within the first few years of transfer to adult care.
Our approach includes ongoing education, involvement of a dedicated transplant staff, appropriate involvement of the family, and the provision of progressive responsibility to the young patient.
Multidisciplinary discussions regarding the progress and appropriateness of transition to adult care occur at regular intervals.

Recognition & Accreditation

Pediatric Transplant Committee Member - United Network for Organ Sharing
Medal of Honor - U.S. Health Resources & Services Administrations National Collaborative on Organ Donation and Transplantation.
Optum Center of Excellence
Recognized as a Best Children's Hospital by 2017 - 18 U.S. News & World Report in pediatric cardiology
Pediatric Heart Transplant Society Registry Vanguard Center Award
Names a Center of Care by the Children's Cardiomyopathy Foundation

What to Expect

From evaluation to post transplant, the heart transplant process involves a long-term partnership between Primary Children’s Hospital and your family. Our exceptional pediatric heart transplant team provides all the support and services you and your child will need, every step of the way.

Transplant Team

Our team include a pediatric heart transplant cardiologist, cardiovascular surgeon, heart transplant coordinator, pulmonologist, infectious disease specialist, rehabilitation specialist, child psychologist, social worker, child life specialist, pharmacist, nutritionist and financial counselor. You’ll have a transplant coordinator to guide you through the whole process.

Evaluation

It’s essential that we carefully and thoroughly assess whether heart transplantation is a good fit for your child. As part of the evaluation for heart transplant, our team of experts will also consider alternatives to transplant and help you decide the approach that is best for your child and your family. This may include the use of mechanical circulatory support (MCS), such as ventricular assist devices (VADs), to help your child feel healthier and function more normally while waiting for a heart. Our team will perform all the diagnostic tests required – including blood and urine tests, echocardiogram, ECG, EKG and, if necessary, heart biopsy. In addition, our social worker and child life specialist will help make sure your entire family is prepared and able to participate in your child’s recovery.

Placement on UNOS List

Once we have determined that heart transplant is a good fit for your child, he or she is placed on a waiting list with the United Network for Organ Sharing (UNOS) for a donor heart. Your child is prioritized based on medical urgency and the wait can vary from a matter of days to several months, to years.

Pre-Transplant Education

Education and communication are central to how we partner with families. There is a lot of information to digest before your child’s transplant – and you may have a lot of questions. We create an open dialogue, providing you with a detailed transplant manual, and arrange meetings with key members of your child’s transplant team.

Heart Availability

As mentioned above, the time it takes for a heart to become available for your child varies widely. Once a suitable heart is available, things move very quickly. Your transplant coordinator will help you navigate the process. You will be notified immediately and, if your child is not already at Primary Children’s Hospital, you will be instructed to arrive as soon as possible. We then make sure the heart we receive is a healthy match for your child.

Heart Transplant

The heart transplant surgery itself takes between four and six hours. During transplantation, our team of experts places your child on heart bypass to supply oxygen to the organs. With your child safely on heart and lung support and under the watch of a pediatric cardiac anesthesiologist, we remove the damaged organ and attach the new heart. Once everything is connected, we remove your child from bypass. Our team will keep you updated on your child’s progress throughout the procedure.

Hospital Stay

Post-surgery, your child will be moved to the Cardiac Intensive Care Unit (CICU). Our team carefully monitors him or her, watching for signs of infection or rejection. During this time, we also prescribe and manage any medications your child needs. When he or she is ready, your child is moved to our intermediate/cardiac care unit for continued recovery.

Post Follow-up Care

Caring for your child after a heart transplant is a long-term proposition and there’s a lot to consider. Before your child is discharged, a transplant coordinator will work with you and our transplant team to make sure you know everything you need to in order to obtain the best follow-up care. We’ll provide you with a detailed follow-up care plan for the months and years ahead. Our team is available 24/7 to answer your questions.