Couple finds hope after baby born with rare disorder - DC News FOX 5 DC WTTG

FOX Medical Team

Couple finds hope after baby born with rare disorder

Posted: Updated:
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.

  • More Health NewsMore>>

  • FOX Medical Team

    Is it safe to kiss your pet?

    Is it safe to kiss your pet?

    Tuesday, July 29 2014 8:24 AM EDT2014-07-29 12:24:46 GMT
    If you’re a pet owner, you’ve probably been there. You lean down to say hello and, before you know it, your dog has planted a big wet one right on your mouth.But a UGA Vet says that “kiss” may come with a downside.
    If you’re a pet owner, you’ve probably been there. You lean down to say hello and, before you know it, your dog has planted a big wet one right on your mouth.But a UGA Vet says that “kiss” may come with a downside.
  • Sandy Springs woman struggles with Alzheimer's diagnosis at 55

    Sandy Springs woman struggles with Alzheimer's diagnosis at 55

    Thursday, July 24 2014 8:42 AM EDT2014-07-24 12:42:55 GMT
    The Alzheimer’s Association estimates about 200,000 Americans are living with early-onset Alzheimer’s disease, diagnosed before their 65th birthday.
    The Alzheimer’s Association estimates about 200,000 Americans are living with early-onset Alzheimer’s disease, diagnosed before their 65th birthday.
  • FOX Medical Team

    Easy 'fat burning' recipes

    Easy 'fat burning' recipes

    Thursday, July 24 2014 7:40 AM EDT2014-07-24 11:40:05 GMT
    Here are the recipes from Nancy Waldeck of the Cancer Wellness Center of Piedmont Hospital.
    Here are the recipes from Nancy Waldeck of the Cancer Wellness Center of Piedmont Hospital.
Powered by WorldNow

WTTG FOX 5 & myfoxdc
5151 Wisconsin Ave. NW
Washington, DC 20016
Main Number: (202) 244-5151
Newsroom: (202) 895-3000
fox5tips@wttg.com

Didn't find what you were looking for?
All content © Copyright 2000 - 2014 Fox Television Stations, Inc. and Worldnow. All Rights Reserved.
Privacy Policy | Terms of Service | Ad Choices