Blog
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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…
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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, CCHD 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…
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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…
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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. CCHD recently asked the CHD Community, families and patients, to share their advice…
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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…
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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. Congenital Heart…
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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…
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New Diagnosis – Jaclyn’s Story
This week, CCHD-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…
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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…
