Patient Stories

Children with heart disease are amazing and resilient. They give us perspective, and make us better people. We share these stories to raise awareness about congenital heart disease, and to honor these children, their families, and the many others who touch our lives. We hope they inspire you, as they have us.
ANNALINA’S STORY

ANNALINA’S STORY

Our daughter, Annalina, was born with tetralogy of Fallot, a congenital heart condition that affects about 5% of all children born with heart defects in the United States. She had two surgeries by the time she was 10 months old.  Even with the many ups and downs of...

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Jack’s Story

Jack’s Story

We found out about Jack’s rare heart defect (Holmes heart, single ventricle) during a prenatal screening ultrasound when I was 17 weeks pregnant. I can remember in vivid detail that moment over 20 years ago, the technician diligently searching for the missing...

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Levi’s Story

Levi’s Story

After an uneventful pregnancy and planned c-section birth at our local Central Oregon hospital, Levi made his way into the world, seemingly healthy and perfect in every way. His first day of life was spent surrounded by his parents, two excited big brothers, and other...

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Sophia’s Story

Sophia’s Story

This is Sophia - we often call her Sophie-Bear or Soph-Soph. She is 6 years old. She has Complete Heart Block and received a Pacemaker in March of 2021.  Sophia from birth to 5 had no major health conditions, her heart block is not congenital (she wasn’t born with it)...

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Michael’s Story

Michael’s Story

I worried about a lot of potential complications and problems during my first two pregnancies, but heart defects were never really on my radar.  As far as I knew, our family had no prior history of heart complications and I had very limited awareness of the...

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