EPISODE SHOW NOTES

Episode 63: When Your Baby is Born With a Congenital Heart Defect featuring Annamarie Saarinen

When Annamarie Saarinen’s newborn daughter Eve was diagnosed with a congenital heart defect she didn’t know that 1 in 100 babies are born with similar conditions and 40% of those are serious and require intervention in early stages of life. What’s more Eve, like so many babies, almost missed getting diagnosed in time because there was no regular congenital heart defect screening for newborns on the Recommended Uniform Screening Panel for newborns. Weeks and then months unfolded with Eve in the NICU until she was old enough to have the heart surgery that would save her life.

CONNECT WITH ANNAMARIE SAARINEN:

Email – annamarie@newbornfoundation.org

Annamarie’s experience set her on a life-changing course to transform the way the medical community approaches heart defects in babies. She co-founded The Newborn Foundation to develop policies, programs and technologies to improve early diagnosis, health outcomes and access to care for mothers and babies and has drafted more than 40 pieces of health legislation, authored more than 200 policy briefings and co-authored numerous published manuscripts on the importance of technology in advancing early detection and treatment of neonatal and pediatric health conditions. In celebration of Congenital Heart Defect Awareness Week, Annamarie shares Eve’s story, the work she’s doing through the pandemic to help get care to babies in resource poor settings, and her belief that those of us that have the means and the ability have to do all we can to make sure that the dreams and wishes other families have aren’t out of reach.

Annamarie is an Economist, Humphrey Policy Fellow and co-founder of both the Newborn Foundation and Bloom Standard, a social impact innovation lab developing medical technologies for children in resource poor settings. The Newborn Foundation was founded after her own newborn was diagnosed with critical congenital heart defects, and has focused on developing policies, programs and technologies to improve early diagnosis, health outcomes and access to care for mothers and babies. Under her leadership, the organization has been recognized for spearheading the U.S. effort to become the first nation to implement universal newborn screening for heart defects – the most common and deadly birth defect. To date, 40 million newborns have been screened as part of implementation in all 50 states and over 5 million have been screened as part of public health pilots and programs in 60 international countries, a dozen of those implementing mandatory universal screening. Annamarie was appointed by the U.S. Secretary of Health and Human Services under the Obama Administration to the federal Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) and has drafted more than 40 pieces of health legislation, authored more than 200 policy briefings and co-authored numerous published manuscripts on the importance of technology in advancing early detection and treatment of neonatal and pediatric health conditions.

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ABOUT YOUR HOST

I’m a writer, a teacher, a native New Yorker, and I love hearing about people’s lives. When I think back to my elementary school days at PS 20 in Flushing, Queens whenever we began social studies or a history lesson I wasn’t that interested in learning about battles, topography, or politics. What I wanted to know was how people lived: What their families were like, how they adapted to their circumstances, what they ate, how they celebrated, how they felt.
 
Sociology became my major at Binghamton University and in my life so far I’ve been an actress, a salesperson, a Zoo Keeper’s Aid, a volunteer animal trainer, an ELL teacher, a mother, and a wife. I’m grateful for the experiences I’ve had, all of which led me to create this podcast which is one of the most rewarding projects I’ve undertaken. I couldn’t ask for a better job than having in-depth conversations with survivors, thought leaders, authors, social justice warriors, and people who believe that we are all connected and then getting to share their stories, insight, and vulnerability with listeners.
 
I’m so glad you’ve landed on this page. I hope you find stories here which resonate with you and that you’ll tune in every week. 
 
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