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  1. New Diagnosis – Jaclyn’s Story

    This week, PCHA-OH Board Member, Jaclyn Frea shares the story of her miracle baby’s diagnosis with Tetralogy of Fallot. My husband Bryan and I were married on March 5, 2011 and we knew that immediately we wanted to start a family. Little did we know, getting pregnant would be a lot more difficult than we…

  2. New Diagnosis – Prenatal Conquering CHD Kits

    This week, our State Chapter Coordinator, Melanie Toth, shares her experience with us as  a new mom finding out her son would be born with a congenital heart defect and how PCHA helps to make sure other families don’t have to go through what Melanie’s did alone.   Like many heart families, when diagnosed with their…

  3. Recap – Arrhythmias and Cardiac Devices

    Complications from surgery, scar tissue left behind, and an underlying disease can bring about arrhythmias in CHD patients and lead to need for a cardiac device. Gathered here are the contributions and resources from PCHA’s Arrhythmia Blog Series.    Jarvik: For Smaller Hearts PCHA’s next series introduces the various Cardiac Devices involved in the treatment…

  4. New Diagnosis – Mary Beth’s Story, Diagnosed in Adulthood

    We continue the New Diagnosis series with Mary Beth Meyers’ story. Diagnosed at the age of 23, Mary Beth shares how she had to put her dreams on hold due to an undetected CHD.        In May of 2012, I was a newly graduated young woman, with hopes and dreams to begin working…

  5. Wellness – CHD and Exercise

    With the brand new year, many of us are making resolutions to better ourselves and our lives. Exercising more is often at the top of the list! This week, Kathleen Baschen, an exercise physiologist at Ann & Robert  H. Lurie Children’s Hospital of Chicago, shares tips on how patients with CHD can get FITT.   …

  6. The Biggest Gift

    After  receiving a heart transplant, Megan Horton,  a Texas Children’s staffer shares how she celebrates the biggest gift she’s ever received . Happy Holidays, Everyone!      Twelve years ago, a family lost their daughter. Twelve years ago, a 17-year-old lost her best friend. Twelve years ago, friends, family and loved ones had to say…

  7. Wellness – The Most Wonderful Time Of Year

    The Holiday Season is meant to be filled with family and joy. It can also be a time of great stress, especially for families with chronically ill loved ones. In today’s post, Becky Hunt shares her experience with losing a child to CHD as well as managing her own illness, and explains how to de-stress…

  8. The Promise of Research for CHD, and Our Responsibility to Advocate

    Advancement in standards of care and best practices can only happen with research.  This week, Margaret King discusses the implications increased CHD research has on not only the community but society as a whole, as well as how important it is for each one of us to contact our representatives to increase research funding.   …

  9. Patient Engagement Tool – The Care Partnership Pyramid

    It is often difficult for parents and loved ones to know what to do in caring for their child during hospital stays, and it can often be a difficult topic to discuss. Christine Martinenza, RN, and Janie Klug, MSN, have implemented this month’s Patient Engagement Tool, The Care Partnership Pyramid, at Nemours/Alfred I. duPont Hospital for…

  10. Recap – Mental Health

    We often shy away from discussing Mental Health, but in this series, patients share their stories and their struggles. We also hear from a psychotherapist, who has personal experience with CHD.  Brittany’s Story, Living with PTSD Beyond Survival, the Struggle with Anxiety and Depression – by Sydney Taylor Courtney’s Story, A Mom’s Perspective Redefining “Of…