Thursday, May 31, 2012
AUGUSTA, Ga. -- Being told you have a sick baby is a nightmare for any parent. For the Rogers family, their first daughter was perfectly healthy, but then an ultrasound for their second daughter showed something was very wrong.
The family immediately turned to the GHSU Children's Medical Center and drove from two hours away to save their daughter's life.
Two-year-old Josey Teil Rogers, from Hartwell, Ga., may not look like it, but she is tough as nails.
"You see her play and you wouldn't believe that in a million years what all she's been through," said her father, Jeremy Rogers.
She's like any other 2-year-old girl. She loves to color and loves to dance, but Josey has already undergone 10 surgeries because of a rare, dangerous disorder doctors found before she was born.
"Six months into my pregnancy we realized that we had complications," explained her mother, Shawna Rogers.
"The ultrasound you could see a side profile, you could see the chin set so far back. She looked at me and I looked at her and I said, 'That don't look right,'" Jeremy explained.
"Immediately they told us that Josey had Nager's Syndrome. The odd thing about it was, my husband ... when he was born, they said that he had Pierre Robin, which is very similar to Nager's Syndrome. Come to find out, he also had Nager's Syndrome," Shawna said.
Doctors immediately knew Josey could be in trouble.
"Part of Nager's Syndrome is, she has micrognathia, which is a recessed chin. Her chin was so far recessed, it was blocking her airway," Shawna said.
"When your chin is set that far back, there's a good chance that as soon as she's born, she can't breathe," Jeremy said.
But doctors had a plan. They delivered Josey Teil inside the pediatric operating room, a first and only, for the Children's Medical Center.
"They put me to sleep and they did a C-section. They birthed her from her head to her shoulders, then intubated her, assessed her airway -- her airway was fine and then they birthed her the rest of the way," her mother explained.
The delivery was a success, but seven weeks later, Josey Teil stopped breathing.
"I was picking up our oldest daughter from the babysitter's and Josey goes into respiratory distress in the back of my car," she said.
Doctors airlifted her back to Augusta, even though the Children's Medical Center was not taking in patients that day. They were on diversion.
"It just so happened that Dr. Bhatia was on call that night and he sort of figured out who the baby was and he's like, 'Oh no, you bring her home,'" Jeremy sad.
To help her breathe on her own, doctors broke Josey Teil's jaw, resetting it with an almost-tortuous distracting device.
"Every day for about a month we had to use a special type of screwdriver and adjust the bottom so it would elongate her jaw, which would help with her micrognathia," Shawna said.
"You would turn it and just walk away and just cry and let her cry and then about five minutes later, we both would be done crying," he father said.
And in picture after picture, you can see her face finally taking shape.
"You knew you were hurting her, but you knew in the long run it was better. We had to do this," he mother said.
After a handful of other surgeries, Josey Teil is back to being an average toddler.
"She is absolutely a miracle child," Shawna said.
And her parents thank the Children's Medical Center.
"We couldn't have picked a better place to go for our child. Everybody comes and they look at her and they just shake their head when she walks down the hallway because they just can't believe how far she's come in just two years," Shawna said. "We have been just so blessed by everybody at GHSU and the doctors and the nurses. I wouldn't wish this on anybody, but I'm glad that they were there to support us and to be a part of our journey."
"You really are their primary focus when you're there. They're educators, so they're compassionate about what they do," Jeremy said.
"We just thank God for the people at the CMC," said Shawna through tears.
Josey Teil has only a few more surgeries to go, and then doctors say she may go years without any trouble.