Updated: 02/26/2014 4:56 PM
Created: 02/26/2014 10:39 AM KSTP.com
By: Steve Patterson
Annamarie Saarinen noticed a flaw our healthcare system. "It's the most prevalent and most deadly birth defect, but we weren't screening for it,” she said. She almost found out the hard way.
When her daughter, Eve, was born, doctors noticed a bit of a heart murmur. That’s not entirely uncommon for newborns, so they didn't make much of it. But just as she was ready to take her newborn home, a nurse spotted an echocardiogram technician, and decided to run a test, just for peace of mind. The test revealed her daughter was experiencing heart failure.
Within in an hour, a cardiologist was at their door. Fortunately, Eve underwent successful heart surgery, but Annamarie started digging to find out how that close call could've been avoided. Come to find out, the answer to that question was already in the hospital. “As it turns out, we had this really simple, low-cost, non-invasive tool that would check the oxygen level in the blood,” she said.
That tool is called a pulse oximeter. It’s a common finger-clip device that is able to detect red flags associated with congenital heart defects in newborns.
From there, Annamarie was on a mission to make sure all newborns got screened before they left the hospital, but along they way, she met moms and dads who weren't so lucky.
"The funerals I had to go to that first year of other families that buried their babies, and these are coffins the size of shoeboxes, and it's completely wrong in every possible way,” she said.
Seeing that sorrow made her dig her heels in even deeper. She went on to co-found the Newborn Foundation. They partnered with the Newborn Coalition, and within nine months of her own daughter's heart surgeries, pulse oximetry screening for newborns was given a tough-to-come-by federal recommendation, increasing early detection of heart disease in newborns. It’s a measure that’s saving lives.
Yet in the midst of this progress came a devastating setback. Annamarie’s daughter, Eve, was diagnosed with brain cancer, but being aware of Eve’s heart condition allowed them to build up her heart for brain surgery. The surgery was a success, but the tumor came back, and the fight for her little Eve continues.
What gives this Minnesota mom the will to fight for the lives of newborns all around the world while still having to fight for the life of her own baby girl? To her, the answer is simple, saying, "She does. Eve does. Eve is the motivation for doing everything I do, because I get to wake up to that face, every day and I can't stand the thought of other mothers not being able to do that.”