Simple screening could save dozens of newborns - ABC 12 – WJRT – Flint, MI

Simple screening could save dozens of newborns

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GRAND BLANC (WJRT) -

(02/10/14) - When you think of all of the things that can go wrong, you realize what a miracle a healthy newborn baby really is.

But, a lot of seemingly healthy newborns babies go home everyday with un-detected, life threatening heart defects.

The Duda's thought they were bringing home a healthy 9 pound bouncing baby boy. They never imagined little Tony had a time-bomb ticking in his tiny chest.

Tony Duda was born right on time. Ultrasounds before he was born looked just fine, and so did he when mom and dad took him home.

"I said to my husband, 'Wow, he sleeps a lot, this is great.' My other son still doesn't sleep and he's almost four years old," said Sara Duda, Tony's mother.

But Tony wasn't eating a lot and his feet were a little chubby.

"His feet were fat, like chubby, 'cause he was a chubby baby and I thought, 'Oh, little fat baby feet,' and he actually went like this to him and he had edema. So when you put your fingers in it, that left a mark," Sara said.

Right away, Sara's husband knew something was wrong, so they took Tony to the ER, where doctors x-rayed his lungs.

"They came out and said he is in heart failure. And I said, 'What'? And they said 'Yeah, he's in heart failure, you need to get him to U of M right now by ambulance. You need to get there right now,'" Sara said.

From a discussion about chubby feet, to heart failure, to Sara it seemed impossible.

"I was just shocked. I couldn't' imagine. Here he is, he looks healthy. He looks fine to me," she said.

Tony took that ambulance ride to Ann Arbor.

"I actually rode with him in the ambulance while my husband followed us and, you know, I was just trying not to lose it," Sara said.

Then she learned the devastating truth. Tony had a life-threatening critical congenital heart defect.

"And they said that he needed to have surgery. And I was just like, 'What? Are you kidding me?' I was thinking he was perfect little healthy baby and you're going to have to cut him open?'" Sara said.
 
Four days later Tony, then just two and a half weeks old, had open heart surgery.

"That was the longest four days ever. We couldn't hold him. We couldn't do anything for him. He just had to lay there and get his medicine and grow, basically. Because the heart is so small it's hard for the surgeons to get in there and work on it," Sara said.

Tony, now 20 months old, has spent three of those months in the hospital. Doctors discovered a second heart defect and he faces another surgery. But - he is alive, and for that, Sara is beyond grateful.

"He could have died. There are a lot of stories about children that don't make it. It's too late. By the time you take them to the hospital, and your realize something is wrong, it's too late and there is nothing they can do," Sara said.

A simple test called Pulse Oximetry in the hours after birth can detect many, but not all, critical congenital heart defects.

"It's just a little sticker, a five cent sticker they can put on their left or right foot and it measures their blood oxygen rate," Sara said.

If the oxygen levels are low, babies can have further testing, like an EKG.

Right now, the Pulse Oximetry test is not required at birth but, thanks to a new Michigan law, it will be required for all newborns starting this April.

It is a test Sara says every parent should request for their newborn, for a peace of mind she believes every parent deserves.

"Ask your doctor. Better to be safe than to be sorry and find out too late," she said.

Sara has a blog www.imperfectlyperfectheart.wordpress.com  

She also belongs to a support group, http://heartsofhopemi.org/

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