Heart Failure Program
Since 1988, we’ve been helping children with live their fullest lives. We are a national center of excellence—but we’re even prouder of the relationships we create with patients and families.
We also understand how helpful it is to do everything in one central program. By treating heart failure early, we can often delay a heart transplant (sometimes indefinitely). If a transplant does become necessary, we already know your child and your family.
About the Team
The team is made up of physicians with advanced training in pediatric heart failure, advanced practice providers, and nurses focused on helping children grow and develop in spite of any limitations from heart disease. We also have pharmacists, financial coordinators, dieticians, child life specialists, social workers, genetic counselors, and mental health providers all working to improve your family’s care.
What to Expect
What is Heart Failure?
Heart failure happens when the heart is not working to pump blood as well as it should. This can happen due to a birth defect or an infection or other medical condition. Many people think that heart failure affects only adults, but people of all ages can have heart failure, including children. Treatment will depend on your child’s age, symptoms, and overall health. It will also depend on the severity of the condition. If heart failure is caused by a congenital birth defect, fixing the defect may cure the heart failure.
When heart failure affects the left side of the heart, the heart has a hard time pumping blood out to the body. This causes blood to back up into the vessels in the lungs, and the lungs become congested. When heart failure affects the right side of the heart, it has a hard time pumping blood to the lungs. This causes blood to back up to the liver and veins, which can cause fluid to build up (retention) in the body.
What are the symptoms of heart failure?
Symptoms of heart failure vary by age and may include:
- shortness of breath or heavy breathing
- feeling more tired than usual
- needing to take frequent rest breaks while playing with friends
- not growing
- swelling of the legs, ankles, eyelids, face or abdomen
- stomach pains
- cough and congestion in the lungs
- sweating, falling asleep when feeding or becoming too tired to eat (babies)
What are the causes of heart failure?
Heart failure can happen in children born with a heart defect (congenital)
Other conditions that may cause heart failure include:
- heart muscle disease or enlargement of the heart muscle (cardiomyopathy)
- infections including bacterial endocarditis, rheumatic fever and myocarditis
- irregular heartbeats (cardiac arrhythmia)
- high blood pressure (hypertension)
A pacemaker may help when the heart is not pumping well because of a slow heartbeat.
- Cardiac Resynchronization Therapy
This uses a special type of pacemaker. This treatment may be used in some children with long-term heart failure.
- Mechanical support devices
Children with severe heart failure may be helped with special devices and tools. Your child may use these while waiting for a heart transplant.
- Heart Transplant
A healthy donor’s heart replaces your child's diseased heart.
Medicines used to treat this condition may include:
- Water Pill (diuretic)
This medicine helps the kidneys get rid of extra fluid that may build up in the body.
- ACE (angiotensin-converting enzyme) Inhibitors
This medicine helps open blood vessels and lower blood pressure. This makes it easier for the heart to pump blood to the body.
- Beta Blockers
This helps lower the heart rate and blood pressure. This also makes it easier for the heart to pump blood to the body.
- Cardiac Anticoagulation Program
Many of our patients need blood thinners (anticoagulants) because heart failure carries a higher risk of blood clots. The Anticoagulation Program provides long term anticoagulation care for our patients. We work closely with families to provide concierge-style care in checking labs and adjusting blood -related medications.
Cardiomyopathy is a disease of the heart muscle that makes it harder for the heart to pump blood to the rest of the body. Many forms of this disease are due to a genetic abnormality that makes the heart muscle weak or stiff. Our close relationship with cardiac genetic counselors allows us to offer testing that may help find the cause of the disease. That way we can learn whether other family members are at risk of developing similar heart disease.
- Cardio-Oncology Collaborative
Oncology is a branch of medicine that prevents, diagnoses, and treats cancer. We work closely with the pediatric oncologists (cancer specialists) and the “Late Effects Oncology Clinic” at Primary Children’s Hospital and the Huntsman Cancer Institute. That way we’re able to help patients at risk of heart failure due to past cancer treatments.
- Cardiorenal Collaborative
Since many of our patients have kidney problems related to their heart conditions, our team works very closely with the nephrologists (kidney specialists) at the hospital.
- Duchenne Muscular Dystrophy (DMD) and Neuromuscular Collaborative
We work closely with the neuromuscular team at Primary Children’s Hospital and the University of Utah to treat children at risk of heart disease due to underlying neuromuscular conditions.
- Pediatric Ventricular Assist Device (VAD) Program
VADs are surgically placed, electrically powered heart pumps that work with the heart to improve blood flow. We are nationally recognized in the innovative use of VADs. We are also one of the leaders within the ACTION Network, which is a group of 35 centers focused on children needing VAD support.
In our program, many children on VADs are able to recover outside of the ICU. Our program also supports children and teens being discharged from the hospital on their VAD if they are doing well.
- UCHAMP-EP Clinic
An arrhythmia is any disorder of the heart rate or rhythm. Electrophysiology (EP) focuses on the heart’s electrical system and EP tests diagnose abnormal heartbeats or arrhythmias.
We have a combined UCHAMP-EP clinic for patients at risk for both heart failure and arrhythmias including those with internal cardiac defibrillators (ICD). This clinic provides our patients with the benefits of two specialized teams in one visit.
- Pediatric Cardiomyopathy Registry (PCMR) Center of Excellence
Since 2017, we have been recognized by the Pediatric Cardiomyopathy Registry as a national center of excellence in the care of children with cardiomyopathy.
- Hypertrophic Cardiomyopathy Center of Excellence
We are the pediatric arm of two centers recognized nationally to provide excellence in care for patients with hypertrophic cardiomyopathy (Intermountain Medical Center and the University of Utah).