Blog

  1. Emersynn Frost

    Emersynn Frost

    Emersynn was born November 2016 and is our miracle baby! She is doing absolutely amazing! At our 20 week anatomy scan, we found out that our little girl has a congenital heart defect (CHD). Shortly after this news, we were referred to a high risk OB and a pediatric cardiologist. When we saw the pediatric…

  2. Jennifer Weiner

    Jennifer Weiner was diagnosed with Truncus Arteriosus and a VSD after birth in 1982. She has had two open heart repair surgeries, at 18 months old and 17 years. After complications arose and various anomalies were uncovered in early adulthood, Jennifer had a stent placed in her LPA and received an ICD. Now 35, she…

  3. Choosing the Ultimate Gift

    For the month of April, PCHA has been focusing on the theme of National Donate Life Month. In the fourth post of our series, Emily Inman shares the story of the day her family decided to give the gift of life, after her mother’s unexpected passing. My mom had just gone back to work after…

  4. Donate Life Month – Choosing to give the Ultimate Gift

      For the month of April, PCHA has been focusing on the theme of National Donate Life Month. In the fourth post of our series, Emily Inman shares the story of the day her family decided to give the gift of life, after her mother’s unexpected passing.     My mom had just gone back…

  5. Donate Life Month – The Call

      For the month of April, PCHA will be focusing on the theme of National Donate Life Month. In the third post of our series, Kathleen Sheffer, a heart and lung transplant recipient, shares her memory of the harrowing moments that came after the fateful call.   I didn’t stress about packing absolutely everything I…

  6. National Donate Life Month – Becoming A Donor

    For the month of April, PCHA will be focusing on the theme of National Donate Life Month. In the second post of our series, Jennifer Weiner, an adult CHD patient, shares why she feels passionately about organ donation and how to sign up as a donor.   A while back, I got a letter from…

  7. National Donate Life Month – The Wait

    For the month of April, PCHA will be focusing on the theme of National Donate Life Month. In the first post of our series, Bill Coon, professional author and speaker, shares thoughts on his wait for a multiple organ transplant.   “I didn’t see the point in journaling yesterday. The day as a whole was…

  8. Action Alert: FY2018 Appropriations

      Email your Representative, today, and ask her or him to sign the Appropriations letter being circulated by CHD legislative champions Representatives Schiff and Bilirakis in support of congenital heart disease-related public health research and surveillance initiatives at the CDC. There is a lot going on in Washington D.C.  While we haven’t stopped our efforts focusing on getting…

  9. National Reading Month: You’re Here for a Reason

    For the month of March, PCHA will be focusing on the theme of National Reading Month. In the 3rd post of our series, PCHA’s Jessica Chenevert talks with us about one special book. Read on to hear why You’re Here for a Reason holds a special place in her heart. When I bought this children’s…

  10. National Reading Month: A Q&A on The Love of Reading with Members of the CHD Community

    For the month of March, PCHA will be focusing on the theme of National Reading Month. In the 2nd post of our series, PCHA asked members from across the spectrum of our CHD Community to tell us what they love about reading. Sharing with us this week, about what reading has brought to their lives,…