EVE'S STORY
The Newborn Foundation | Coalition was launched after a baby from Minnesota - Eve - was diagnosed with critical congenital heart defects at only two days old. She was only able to survive because of early detection and access to life-saving treatment. In just a few short years, the Newborn Foundation’s advocacy and policy efforts have transformed the landscape of newborn health - and has already helped save and improve thousands of the littlest lives. Because of Eve, all 4 million newborns born each year in the U.S. are now being screened with pulse oximetry for heart defects and other serious health conditions…and we have projects across the U.S., impacting the hardest to reach and most underserved babies across the nation.
ABOUT US
The Story
Since its founding, the Newborn Foundation | Coalition has accelerated the pace of early detection and intervention for some of the world’s most treatable newborn health conditions, while supporting innovations in diagnoses and treatments for the top killers of newborns - from the most common conditions to the elusive and rare.
Co-founded by recognized health policy experts and the mother of a baby diagnosed at 48 hours old with congenital heart disease, the Foundation is the only international organization of its kind solely focused on leveraging health IT and technology innovation to improve outcomes and reduce disparities for the newest, most vulnerable citizens. The Newborn Foundation has vast domestic and international footprint that has already had a measurable impact on newborn health in more than 30 U.S. states and five nations around the globe.
As a 501(c)(3) organization, the Newborn Foundation continues to be recognized for the development of groundbreaking tech-based pilot projects, accredited informational resources and open-source educational materials that directly impact early detection and interventions for the most life-threatening newborn health conditions. As a 501(c)(4) sister organization, the Newborn Coalition is recognized as an advocacy and policy resource for healthcare providers, partner NGOs and governmental health agencies. The Newborn Foundation | Coalition works in collaboration with the clinical community, industry and public health worldwide to craft and advance policies that directly impact newborn health.
To learn more about the importance of early detection and intervention for some of the world’s most treatable newborn health conditions, watch this video.
One Journey
Sometimes all it takes is one journey…such was the case with Eve. Why couldn’t the doctors see that Eve was sick? Her heart was three times the size it should have been, yet she was going to be discharged and sent home as a “healthy” baby. Why were other babies leaving the hospital with undiagnosed critical heart defect - at the jaw-dropping rate of one in every three? After Eve recovered from her heart surgeries, the Minnesota Newborn Heart Screening project was born. It looked at a technology that already existed, but in a whole a new way. And it was the first multi-center pilot conducted in collaboration with a state department of health providing data that was a catalyst for national adoption of this important test.
Fighting for Early Detection at Home and Abroad
The years ahead would lead to hundreds of briefings with elected officials, dozens of laws passed. In between hospital visits, Eve would often go with her mom, the Newborn Foundation’s co-founder Annamarie Saarinen, to testify in front of legislators and other public officials, on the importance of finding serious “hidden" health problems in babies. Technology was the key - in early detection and in connecting the youngest, most fragile newborns - in some of the hardest to reach places - with the care they needed. The Newborn Foundation’s work expanded internationally too, with screening, telehealth and infrastructure programs in the UK, Morocco, the Philippines and rural China.
The BORN Project
The little red beam of light made the remarkable leap into mobile health. This was a critical phase of our efforts - and like Eve’s name denotes, this mHealth innovation was the first of its kind. The Newborn Foundation’s BORN Project was built around a low-cost, medical-grade application that could benefit babies and clinicians on the front lines in the lowest-resource health settings. It may be looked back on as the single most important clinical tool in reducing newborn mortality that has ever been deployed, helping reduce preventable newborn deaths by one-third.
A Chance to Grow Up and Be Loved
One thing has become clear in these past few years, there are no coincidences, no lucky run-ins. Eve was diagnosed with a brain tumor in 2013. She has had two additional surgeries and is currently doing well - still changing the world with her bravery and powerful story. The universe has played the role of convener with Eve in center. Because of her - innovators, industry, clinicians, researchers, friends, allies, mothers, fathers, advocates, and government officials of every stripe have come together to profoundly improve newborn health. In years to come, when Eve asks about her scars the simple explanation will be “you helped give other babies a chance to grow up and be loved."