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The miracles that can take place when a parent is motivated by the love of their child is amazing. We hear stories of parents finding superhero strength, confronting danger and sacrificing their own lives if necessary to protect their young. This same supernatural power is what drives parents to change laws, create movements and inspire the world to be a better place for our children. As a brand which was founded in the same spirit of love for children, we’d like to recognize one of our favorite foundations who has changed the lives of millions of babies – The Newborn Foundation.
“There’s something wrong. We need to transfer your baby right now.”
These are not the words you want to hear when you are preparing to take your newborn baby home. But they are the exact words Annamarie Saarinen and her husband heard moments before leaving the hospital.
As they prepared for discharge, the rounding pediatrician stopped in to see their new baby girl. She listened to her heartbeat and heard a murmur, which is fairly common and innocent among infants. It was something she was comfortable waiting to check on later – at their one-week post-discharge checkup. 30 minutes later, the pediatrician circled back to the room. Coincidentally, there was a pediatric echo technician that had brought special equipment over to the hospital to evaluate another baby that afternoon. They may as well just squeeze the Saarinen’s newborn in for an evaluation – just for “peace of mind” before the Saarinen family went home. Less than an hour later, there was a pediatric cardiologist standing in the doorway of their hospital room announcing that their baby was in heart failure. Her heart was already three times larger than normal – and she needed to be immediately transported to a Neonatal Intensive Care Unit at the University of Minnesota Children’s Hospital.
Annamarie and her husband were stunned. They hadn’t even settled on a name yet. Their baby looked and acted totally healthy. How could they be moments away from welcoming their new baby girl home to being fully engaged in a fight for her life? They named her Eve – and the months that followed were full of tests, medications and hospital stays. Doctors were unsure about Eve’s future. They recommended a series of surgeries to repair her tiny walnut-sized heart. The family prepared for the worst but never gave up as the doctors halfway across the country in Boston, successfully performed the surgeries. Eve and her family fought for her life and won.
While Annamarie was incredibly grateful for Eve’s recovery, she was haunted by the thought of how she was moments away from taking her baby home with an undiagnosed and potentially fatal heart defect. She started digging – learning that 1 of every 100 babies is born with a congenital heart defect, or CHD. More astounding still, was that 1 in 3 babies with heart conditions leave the hospital without a diagnosis. She couldn’t imagine or accept the heartache experienced by parents who have/could have lost children simply because their heart problem was missed altogether or not diagnosed in time.
Through her research, she learned about pulse oximetry, a painless, rapid and inexpensive way to screen for heart defects. At that point, only a few European studies and small pilots were underway. She saw an opportunity to make a difference. She founded the Newborn Foundation and worked with Eve’s medical team to establish the first multi-hospital pilot project done in collaboration with a state Department of Health. That data and experience made its way to Washington DC, to the federal advisory committee that evaluates all the things every newborn is screened for prior to discharge. That committee (ACHDNC) and the U.S. Secretary of Health and Human Services soon recommended that all 4 million babies born in the United States each year be screened for critical congenital heart defects. State by state, Annamarie and the Newborn Foundation continued to fight for the mandatory screenings of newborns using pulse oximetry. She testified 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. Early detection was the key to survival.
It’s been 10 years since Eve’s birth and in just a few short years, the Newborn Foundation’s advocacy and policy efforts have transformed the landscape of newborn health – saving and improving the lives of thousands of babies across the world. Because of Eve and her motivated mother, 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. The Newborn Foundation’s work has since expanded internationally with UN partnerships, and screening, telehealth and infrastructure programs in more than a dozen countries, including the UK, the Philippines, Mongolia, India, Bolivia, Mexico and China. In a remarkable success story, China just this past summer formally added newborn heart screening to its universal screening panel). Their work is far from over.
Last week, Eve turned 10 years old. This milestone birthday wouldn’t be possible without the early diagnosis of Eve’s “hidden” (but life-threatening) conditions as a newborn – and access to the medical technologies and teams that ushered her through HALF A DOZEN surgeries. To celebrate her life, Eve made a birthday wish to help others benefit from the same early detection and access to care that saved her life.
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