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Mom Highlights Importance Of Heart Defect Detection

When babies are born in a Florida hospitals, doctors are required to perform a series of tests to make sure the little bundles of joy are healthy. But right now, a simple test, called a pulse oximetry test, which checks for critical congenital heart defects, isn’t required. A bill filed in the Florida legislature would change that. And Andrea Pilna, whose son, Sebastian, died in early 2012 from a congenital heart defect, said that makes sense.

"You perform hearing tests, and you perform metabolic screenings, but you don’t check the most important organ in their body? And that’s heart. You know. I can live without hearing, even though that’s not something you would want for your child, of course. But, I cannot live without a heart,” Pilna said.

Pilna said when Sebastian was born the doctors told her she was going home with a healthy baby boy. But to Pilna, it seemed something must be wrong. She was using a monitor in Sebastian's bassinet that monitors irregular breathing.

"And it started going off, maybe on the third night at home. It just beeped once. And the next day it beeped twice. And I told the doctor about it. I told her the monitor keeps going off, but when I jump up to see if he’s breathing, he’s breathing," Pilna said.

Pilna said the doctor listened to Sebastian's chest and told her not to worry. But Pilna says Sebastian’s breathing became rapid. He lost his appetite. And finally came down with a fever.

“By the time we got to the office it was 100.3 And when the nurse saw him then she brought in the pulse oximeter. Immediately she called the doctor. She asked me how long has he been breathing like this. I said,' I’ve been always telling you he was breathing fast, but everybody kept telling me it’s fine. It’s normal,” Pilna recalled

Sebastian died from complications doctors said might have been caught and more easily fixed if he’d been given a pulse oximetry test at birth.  Pulse oximetry tests use light probes to measure the amount of oxygen in a person’s blood. A lot of people have probably seen them. The padded clothespin type thing doctor’s often clamp on patients fingers during an office visit is an example of a pulse oximetry test. They come in a variety of sizes and are quick and inexpensive to administer. And Doctor William Blanchard, a pediatric cardiologist said they help doctors catch potentially life threatening issues that might otherwise go unnoticed.

“Our patients, when they’re born are much, much smaller. And the pediatrician doesn’t always have the most cooperative patient when they go to listen to their heart which is beating at 150 to 170 beats per minute. It’s often very hard to really distinguish some of these sounds,” Blanchard said.

Right now, not every hospital requires that doctors perform the test on babies after they’re born.  Blanchard said that could be for a number of reasons, but he says every hospital has the equipment needed to perform the test and parents shouldn’t be hesitant to request it.  Meanwhile, Senator Jeremy Ring (D-Margate), and Representative Cary Pigman (R-Sebring) have filed bills that would require hospitals to perform the test as part of the exam that’s given to all newborns, unless of course, parents object. The Senate bill has two more committee to go before reaching the floor.  The House bill has not yet been heard.  Some worry about adding another test to the lineup doctors already perform, but supporters argue it’s inexpensive, takes seconds and parents have the right to object.

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Regan McCarthy is the Assistant News Director for WFSU Public Media. Before coming to Tallahassee, Regan graduated with honors from Indiana University’s Ernie Pyle School of Journalism. She worked for several years for NPR member station WFIU in Bloomington, Ind., where she covered local and state government and produced feature and community stories.

Phone: (850) 645-6090 | rmccarthy@fsu.edu

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