Children’s Cardiomyopathy Awareness Month

September is Children’s Cardiomyopathy Awareness Month. Pediatric cardiomyopathy is the top cause of sudden cardiac arrest in children and resulting heart transplants. Nearly one in every 100,000 children in the United States under the age of 18 is diagnosed with cardiomyopathy. According to the American College of Cardiology, the burden of pediatric heart failure is on the rise in the United States.

Kevin P. Daly, MD, et al., write: “pediatric HF is a morbid disease, approaching and exceeding mortality seen with many common pediatric cancers.”

CTSurgeryPatients.org writes, “Cardiomyopathy is a chronic disease in which the heart muscle becomes abnormally enlarged, thickened, or rigid.  As a result, the heart can no longer contract or relax normally. As cardiomyopathy worsens, the heart becomes weaker. Eventually, the heart loses its ability to pump blood through the body and maintain a normal electrical rhythm. Irregular heartbeats (arrhythmias) and heart failure may occur.”

Cardiomyopathy can present as breathlessness, even without activity; swelling of the lower extremities, legs, ankles and feet; bloating of the abdomen due to fluid buildup. Further symptoms can include coughing while lying down, fluttering heartbeat, difficulty falling asleep as well as chest discomfort, dizziness, lightheadedness and feinting.

The Cheeldren’s cardiomyopathy foundation wrote that, “Cardiomyopathy remains a leading cause of heart transplants in children over one year of age. Nearly 40 percent of children with symptoms end up receiving a heart transplant or dying.”

A few quick facts:

• 2 out of 3 children do not have a known cause
• A classroom of children are 25 diagnosed with cardiomyopathy every week in the United States
• Out-of-pocket treatment expenses can add up to $62,000per year
• Mortality rate EXCEEDS mortality of all childhood CANCERS COMBINED
• There are 47research studies on childhood cancer compared to 1 study on pediatric cardiomyopathy
• For every $100 of government spending on heart disease research only 65 cents goes to pediatric cardiomyopathy research

Undiagnosed cardiomyopathy increases the risk of sudden cardiac arrest especially amongst younger athletes as well they explain, “Every year, 7,000 children under the age of 18 will have a sudden cardiac arrest.”

Treatments for cardiomyopathy can include regimens of Anticoagulant, Beta blockers, ACE inhibitors, Diuretics, Antihypertensives, Statins and Antiarrhythmics so the increasing incidence of children’s cardiomyopathy places additional strain on medical practices and pharmacies to support patients and their families.

Surgical options such as Cardiac catheterization, or revascularization present additional challenges during recovery.

According to the CDC, “Cardiomyopathy can occur in children regardless of age, race, and gender. Pediatric cardiomyopathy can be inherited or acquired through a viral infection and sometimes the cause is unknown.”

There are four main varieties of children’s cardiomyopathy, “Dilated” where one of the chambers (ventricles) of the heart is enlarged; “Hypertrophic” where the heart muscle is thickened. This often presents in childhood or early adulthood and can cause sudden death in adolescents and young adult athletes; “Arrhythmogenic” where the disease causes irregular heartbeats or rhythms, more common in males; and the rarest type “Restrictive” where heart muscle is stiff or scarred, or both.

The National Institutes of Health describes the condition grimly, “For children with DCM, the prognosis is generally poor. Approximately 40% of children undergo cardiac transplantation or die within 5 years of being diagnosed with DCM. Cardiac transplantation in children is a successful treatment for end-stage heart failure, but it does carry the burden of life-long immunosuppression and limited graft survival, as well as the potential need for repeated heart transplantation procedures.”

Sadly, a majority of children who are diagnosed with cardiomyopathy have DCM or HCM, “Both of these functional types are associated with abnormal cardiac structure and function, and poor prognosis.”

Myocarditis has seen more news coverage in the past two years due to increased incidence of the disease in children who suffered from COVID-19 Dr. Jack F. Price, MD, FAAP, FACC wrote for the Myocarditis Foundation.

“Myocarditis is uncommon in children but occurs more commonly among those with COVID-19. In a recent study published in the Morbidity and Mortality Weekly Report from the Centers for Disease Control (CDC), only 86 children <16 years of age were diagnosed with myocarditis among nearly 65,000 (0.133%) children with COVID-19. During the same time period (March 2020-January 2021), 132 out of nearly 4 million children without COVID-19 developed myocarditis. Although the overall risk was low, the data translate to a risk of myocarditis that is more than 30 times higher among COVID-19 patients.”

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