How one baby's experience and a little red beam of light are saving newborn lives

Annamarie Saarinen annamarie@newbornfoundation.org

Abstract

Confronted with no mechanism for screening newborn babies for the most prevalent and deadly birth defect, this rapid-fire talk touches on the merger of science, medicine, medical technology and advocacy to bring about a systematic change to standard newborn care that is saving lives around the globe. Leveraging her own experience - with a well-appearing baby who was actually in profound heart failure – one Minnesota mother helped craft the nation’s first multi-hospital newborn pulse oximetry screening pilot done in collaboration with a state department of health. Prior to universal heart screening in the United States, more than 1/3 of infants with critical congenital heart defects were being discharged from the newborn nursery undiagnosed. These babies risked serious consequences with delayed identification of their conditions – including heart failure, circulatory collapse, end-organ, neurological damage and even death. The launch of the study coincided with the start of the Newborn Foundation along with a social media support community for CHD families. Within a year, the pilot project and associated advocacy provided key data driving the US Department of Health and Human Services to formally add newborn CCHD screening to the Recommended Uniform Screening Panel (RUSP) in 2011. Today, 98% of U.S. newborns are screened before hospital discharge (more than 17 million so far) or after home birth and more than 5,200 babies’ lives have been saved or significantly improved through earlier diagnosis. Starting with that one baby in the Midwest, data began pouring in that showed the screening algorithm designed was also effective in picking up otherwise undiagnosed pneumonia, sepsis, and other conditions. An open source toolkit was designed for clinicians, public health and policy officials around the globe. A robust UN workgroup emerged, specifically looking at the role of pulse oximetry in reducing newborn mortality in the developing world. The Newborn Foundation took a lead role in designing a scalable train-the-trainer implementation model. Upon recognizing that novel, affordable equipment solutions were needed, the innovation team helped co-develop the world’s first low-cost mobile phone pulse oximeter to detect low oxygen saturations in babies. This device has been recognized as one of the single most innovative solutions developed to support early diagnosis of babies in low-resource health settings. In conjunction, the BORN Project is screening more than 50,000 newborns in rural western China and another 100,000 in the Philippines and has been highlighted by the UN and the WHO as a program leveraging innovation to save newborn lives. It is estimated that routine pulse oximetry screening in the first 48 hours of life could reduce newborn mortality by nearly one-third, saving more than 1 million lives annually. Today, 10 countries have implemented universal screening and more than 50 others are in the process of piloting or evaluating as a public health standard.
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