Couple finds hope after baby born with rare disorder

FOX Medical Team

Couple finds hope after baby born with rare disorder

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ATLANTA -

It happened so quickly: Jeff and Marisa Bradford went from expecting a baby to having no idea what expect next.

Over the last 13 months, the Duluth couple has learned to reach beyond a difficult diagnosis to find hope.

Brylee is the Bradfords first child. To them, every time Brylee looks in their eyes, or smiles or talks in her own special baby language, it feels like a gift.
    
"Going into it, we thought we were giving birth to a healthy child. That was what we were told by the doctors," said Marisa Bradford.

Marisa says her baby didn't move much during her pregnancy, which didn't worry her until Brylee was born last May.

"All of a sudden the air got sucked out of the room, once they got her out of my belly," said Marisa. "She wasn't breathing, she was severely contracted, she certainly wasn't moving."

Brylee was diagnosed with Nemaline Rod Myopathy, a rare -- almost always fatal -- genetic disorder.

"There were days in the hospital, all you do is sit there and cry, because that's all you know," Marisa said.

The day after she was born, Brylee was christened, just in case.
   
"It was pretty scary. We didn't think she was going to be here. We had no idea. They just said, ‘'We've never seen this before,'" said Jeff Bradford.

To help the Bradfords, Children's Healthcare of Atlanta brought in its palliative care team of doctors and nurses who guide families facing sometimes heart-wrenching medical decisions.

"In the beginning it was a tough conversation when we thought she was going to pass, and we thought we were having the conversations of, 'OK, how do we let her pass peacefully?,'" said Marissa.

Brylee nearly died twice, but pulled through. She's getting strong enough to go home. But first, her parents had to learn how to operate a ventilator, and feed her through a gastric tube.

"I will honestly say: nothing ever intimidated me from the very beginning. When they said, ‘We're going to put a trach in her.  OK. How do I change it,'" said Marissa.

The goal now, is to get Brylee stronger with weekly physical and occupational therapy.
 
"So working with her has really just shown me that she's capable of who knows what? And that's why we don't put limits on what we expect from her and what we're trying to work on with her," said Juliana Ryan, a physical therapy student.

They're baby steps. To the Bradfords, they're hope.
        
Marisa says Brylee is now able to be off the ventilator for four to five hours a day, which is a big step, and she's making progress holding up her head.

The Bradfords are one of about 400 families who've worked with Children's palliative care team. Marisa says they're grateful for the support.

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