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Science and the Environment

New Legislation Would Shed Light On "Blind Spot" In Infant Screening of Heart Disease

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Three month old Chloe with her bear. Credit-March of Dimes

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Most of the time perfection is too much to hope for, but not when you’re talking about the birth of your child. All expecting parents hope for a happy and healthy baby. But what happens when all the tests say your baby is perfect, but you just can’t shake the thought that something is wrong? KSMU’s Shane Franklin has the story.

Most people remember November 4th, 2008 as the day the United States turned a page in political history and began a new chapter on American equality. Around the country and around the world people celebrated; some cheered, and some even cried.

Meanwhile, one Missouri family had a different reason to celebrate, and perhaps by the end of the night, had a reason to shed some tears of their own.

Chloe Manz was born on Election Day, and after passing the initial screenings that all newborns go through, Chloe’s mother, Kelly Manz, was not satisfied. She insisted that Chloe be kept overnight in the nursery to be watched.

“I can’t explain it. I just had this feeling that something was wrong and I couldn’t shake it. I was naïve and thought that at my ultrasound, since everything was okay and I didn’t have any markers for anything, that my baby would be fine,” says Manz.

That night while in the nursery, Chloe was tested with a pulse oximetry machine, which tests for oxygen levels in the blood. According to Manz, Chloe’s oxygen levels were in the low 60s. The levels should have been near 100 percent.

Trina Ragain is a Missouri State Director of Program Services at the March of Dimes.

“In this case, once they did the testing, they identified that Chloe had four heart defects that they previously had been unable to identify through ultrasound or any other means,” says Ragain.

It was found that newborn Chloe had CCHD, or Critical Congenital Heart Disease. If Manz had not insisted on additional care, Chloe would have gone home undiagnosed.

“The issue that we are trying to prevent of course is babies going home from the hospital without CCHD being identified. We know that when a babies blood oxygen level is not in the high nineties or 100 percent, where we expect it to be, they do not have enough oxygen in the blood, and so that typically can result in disability, because they were not getting enough oxygen to the brain, or it can even result in death,” says Ragain.

Ragain says the earlier the condition is diagnosed, and medical professionals intervene; the better the outcome will be for the child. Unfortunately though, she says 10 to 15 Missouri babies die each year from CCHD. Some of these deaths are preventable with a simple test.

According to the Centers for Disease Control and Prevention, CCHD is the number one cause of infant death from birth defect. So the question being asked by many is- Why is CCHD not screened for in the Universal Newborn Screening?

Manz, along with others, such as the March of Dimes, the American Academy of Pediatrics, and the American Heart Association are all pushing for a bill known as Chloe’s Law, named after little Chloe Manz, to pass through the Missouri General Assembly, ensuring that all babies born in Missouri hospitals are screened for CCHD before leaving the hospital.

Dr. Edward Stevens is a neonatologist with Mercy Springfield. Stevens says that CCHD is often overlooked because of a “blind spot” in the current screenings.

“The consequence of missing this type of disease is extremely severe. Probably half of the babies that go home with congenital heart disease will not survive or have a much worse outcome because they got very sick before it was detected. With this testing, were able to pick up that group of babies and get immediate attention,” says Stevens.

Stevens says he has been voluntarily using pulse oximetry to screen babies for CCHD for over a year now, ever since the initial studies came out from the CDC. In fact, he says he’s personally witnessed the screening help save the life of a local baby.

Stevens whole heartedly recommends the practice, and hopes that Chloe’s Law is passed in Missouri.

But, how invasive is the pulse oximetry test and is it expensive?

“The screening is just painless, fast, easy, and why not? It costs less than $10 to the parents or the insurance company, so why not just double check to make sure your baby is going home healthy?,” says Manz.

Chloe’s Law is currently in the both chambers of the General Assembly, as SB 230 in the Senate and HB 274 in the House. The Legislature returns from spring break next week, and the March of Dimes says they expect both bills to be read on each chamber’s floor for the third time in the coming weeks.

Luckily for the Manz family, Chloe did eventually go home, after experiencing open-heart surgery at 4 months.

Chloe will have to have one more surgery before she grows old enough to drive, but Chloe’s mom says she’s just thankful that Chloe will have the opportunity to grow that old.

For KSMU News, I’m Shane Franklin.