Newborns are screened for all kinds of diseases and complications. But thousands of babies could be missing out on a non-invasive and potentially life-saving test.
It started as a mother's intuition into the condition of her little girl, and now that inquiry could lead to a law that could mean life or death for Missouri newborns.
Watching 4-year-old Chloe Manz tumble across her living floor, it is hard to believe the energetic, athletic little girl suffers from heart problems.
It was a diagnosis her family never would have known if her mother didn't question the nursing staff after Chloe's delivery.
"I felt like something was wrong. I can't explain it. I just had a bad feeling. I mentioned it to the nurses and they reassured me everything was fine," Chloe's mother, Kelly Manz, said.
But Manz wouldn't take no for an answer and after an hour-long exchange, she insisted the nurses take Chloe to the nursery for further observation.
They did and also checked Chloe's oxygen levels.
"A healthy baby should measure 94 to 100 percent. And Chloe measured in the low 60 percent, so she was only getting 60 percent of oxygen," Manz said.
Further tests showed a congenital heart defect, and at 4 months old, Chloe had open heart surgery. It was one of a series of operations she already undergone. And she'll likely need another when she's a teenager.
Now, Manz is pushing for other families to get the same non-invasive screening Chloe received.
Senate Bill 230, also dubbed Chloe's Law, would make pulse oximetry tests routine for all newborns in Missouri. Manz has been lobbying for this bill for the past four years.
"I think with the support of the March of Dimes, American Heart Association and other organizations, I think we're really on tract to get that law passed this year," she said.
It is a law Manz says would bring peace of mind or trigger immediate action for Missouri families.
"There are more families that are going to have heart defects with their children and this law is for them. So their babies will have a chance to get medical intervention immediately," she said.
Missouri lawmakers could vote on SB 230 later this month. Kansas is also considering a similar measure.
In 2011, Health and Human Services Secretary Kathleen Sebelius recommended the pulse oximetry screening to the universal newborn panel. However, that doesn't mean states have to adopt that recommendation.
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