1. Action Alert: FY2019 Appropriations

    Email your Senators, today, and ask her or him to sign the FY 2019 Appropriations Letter being circulated by CHD legislative champions Senator Durbin and Senator Grassley in support of congenital heart disease-related public health research and surveillance initiatives at the CDC. Each year, we need to make sure that Congress continues to fund the congenital heart…

  2. Advice – 10 Pieces of Advice for the New CHD Parent

    Learning your child has a CHD can be overwhelming. Suddenly, you’re thrust into unfamiliar territory filled with strange terminology and new doctors. But so many families have bee there too, and they have so much knowledge to share, garnered through their experience.  PCHA recently asked the CHD Community,  families and patients, to share their advice…

  3. Lifespan – Just Like Me, in D.C.

    One of the most powerful moments at the Congenital Heart Legislative Conference can come not when shaking hands with one of our nation’s leaders, but when you have the chance to connect with someone just like you, just like your child, an everyday CHD survivor. Ken Woodhouse, and adult CHD patient with tetralogy of fallot,…

  4. New Diagnosis – Brooke’s Story

    This Week, Brooke Wilkerson shares the story of her son’s prenatal misdiagnosis, the correct diagnosis after birth, and the roller coaster of emotions the journey brought.  “There’s something wrong with your baby’s heart.” “Just say it,” I thought, “Just tell me that there is something wrong so that I can mentally prepare myself for what’s…

  5. Brie Harrison

    It was the strangest thing. Something I can’t fully explain. My entire pregnancy I had a feeling that something was different. Leading up to the 20 week scan I kept saying to my husband “I’m scared. What if something’s wrong!?! I feel like somethings wrong!”.  Call it premonition, call it mother’s instinct, or simply coincidence…

  6. New Diagnosis – Pulse Oximetry

    This week we will hear two perspectives on the benefits of pulse ox and the effort to make this non-invasive test a standard screening of newborns. Pulse Ox screening has made it possible to detect CHD in many newborns that would have otherwise gone home undiagnosed. This week’s contributions were provided by Dr. Gerard Martin, a…

  7. Jeremy Park

    Jeremy was born on December 24, 2012, with Hypoplastic Left Heart Syndrome (HLHS). HLHS is a severe congenital heart defect where one side of the heart didn’t develop. In Jeremy’s case, his left ventricle, mitral valve, aortic valve, and aorta didn’t develop. HLHS requires three open heart surgeries to recreate the anatomy in order to…

  8. Letzer Family

    Our story began at Freddie’s 19 week ultrasound.  The sonogram technician kept circling around his heart and said “there’s a problem with his heart anatomy”. We were first told he had Truncus Arteriosus; subsequently we learned his true diagnosis: Tetralogy of Fallot with Pulmonary Atresia with Multiple Aorto-pulmonary Collateral Arteries (MAPCAS). A ruined pregnancy turned into a silent blessing as we had time to research the best medical facilities in the country to cure this defect. After…