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  1. Father’s Day – Joe’s Dad

    In May, PCHA honored Heart Moms for Mother’s Day. This month, we’re taking time to shine a light on the great Heart Dads out there, who conquer CHD along side us and are often unsung in the fight. This week, Joe Valente, an adult CHD patient, thanks his dad for the sacrifices he made a…

  2. Mother’s Day – A Mother’s Day Gift

    Mother’s Day is a day to shower the women that have loved us  and cared for us with gifts in appreciation!  We bring them flowers and homemade cards, in hopes of bringing a smile to their faces. But last Mother’s Day, Melissa  Zolk  received a very different kind of gift, one that changed her daughter,…

  3. Beyond the Heart – Nauman’s Story

    Adult patient and medical student, Nauman Shahid, shares what he learned about the way different body systems interact with one another through Medical School and personal experience. Here, he shares the complications that developed with his lungs as a result of his Congenital Heart Disease.

  4. Beyond the Heart – Marissa’s Story

    There is still much unknown about adult Congenital Heart Disease Patients and the long term effects of their treatment in childhood. This week, Marissa, a single ventricle patient about to complete her nursing degree, shares her story of an unexpected complication, which almost cost her future in nursing.  I call myself a “heart patient”, but…

  5. Beyond the Heart – Rebeka’s Story

    CHD can affect so much more than the heart, yet physicians unfamiliar with Congenital Heart Disease may have trouble seeing the big picture. In this week’s post Rebeka Acosta, PCHA Steering Committee member and Mom to two heart warriors, shares the struggle of coordinating care outside of cardiology. In the last few decades, science and…

  6. Beyond the Heart – Anna’s Story

    The effects of Congenital Heart Disease aren’t limited to the heart. Patients will often experience complications with other body systems. This week Anna Archer shares her how her late CHD diagnosis caused a brain abscess. Growing up and Diagnosis I was your average, ordinary, little girl for the first decade of my life and lived…

  7. 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…

  8. 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…

  9. New Diagnosis – Fetal Echo

    More often now, than a generation ago, babies born with CHD are being diagnosed prenatally. This week, Dr. Sheetal Patel, from Lurie Children’s Hospital of Chicago and Assistant Professor of Pediatrics, Northwestern University Feinberg School of Medicine, explains the role prenatal echocardiography plays in diagnosing CHD and the benefit of that early diagnosis.       …

  10. Zipperstrong Project

    As we continue through heart month, one amazing program, called Zipperstrong, helps honor families affected by CHD and their stories. The work done by photographer SheRae Hunter helps remind us all that even our scars can be beautiful.        “I am the mommy of a child who is different.   All I ever want…