News from the Hill: Staffers Learn about Congenital Heart Disease

On Wednesday, February 24, the American Heart Association and the American College of Cardiology hosted a briefing on Capitol Hill on congenital heart disease (CHD). The event helped to raise awareness about the country’s most common birth defect and educate the audience of congressional staff on the need to look at ways to improve access to care and advance research for CHD patients.

Though heart disease is often perceived as an adult condition, CHD exacts an enormous toll on children. Each year, CHD kills 1,600 infants before their first birthdays, making it the No. 1 killer of children born with birth defects. The good news is that advances in medical research, technology and treatment mean that today most patients live to adulthood however, these adult survivors face an entirely new set of challenges.

Dr. Gerard Martin, Pediatric Cardiologist and Senior Vice President at National Children’s Medical Center, joined two You’re the Cure advocates, Jodi Lemacks, a caregiver to her son Joshua, and Lauren Gray, an adult CHD survivor, to discuss the unique challenges of living with congenital heart disease and the need for changes to address these challenges.

Sharing is caring:

Tags:

2 Responses to “News from the Hill: Staffers Learn about Congenital Heart Disease”

  1. Sarah says:

    Thank you from a Mommy of a CHD angel.

  2. Anonymous says:

    I am a mother of a deceased CHD child and a Registered Nurse who specialized in Pediatric Cardiology. Their are many issues of those surviving CHD into teenage and adulthood. One issue is accessibility of care; such as placing Automatic External Defibrillators in our schools. My child was 13 yrs old at Middle School when he went into Sudden Cardiac Arrest and passed away. He was previously diagnosed with a CHD. Had an AED been present on grounds his cardiac arrest may had a better outcome. Though tragic as this event, there are many other parents dealing with death of a child in their school who did not know their child had a Congenital Heart condition and died from Sudden Cardiac Arrest. It is estimated 7,000 children die annually from SCA while at school or during sports events at school. Legislative efforts should be made to provide for access of care such as AEDs on school grounds. Children born with Congenital Heart Disease are living longer due to advances in care. Let's provide them better access to care so they can continue to live longer. Parents of our son Richard

Leave a Reply