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Wesley Chapel girl's grave brain disorder ends with happy recovery

Looking back, Marge Whaley clearly recalls the first sign of danger: "the bird face.''

Her 4-month-old granddaughter, Hannah Rose, opened and closed her mouth like a baby bird feeding. It was subtle and infrequent, but anything unusual was bound to arouse suspicion in this grandmother, a nurse since 1963.

"They didn't last long, maybe 45 seconds,'' said Whaley, 72, who served on the Pasco School Board for 16 years. "But I just knew she wasn't in there.''

Whaley debated whether to tell her son David and his wife, Tabatha, who both worked while Hannah attended what they lovingly called Grandma Daycare. "I thought maybe it would pass, she would outgrow it.''

But within weeks, while Whaley was changing a diaper, the bird face returned, only longer this time. She consulted with Tabatha's mother, Virginia Butler, who also watched Hannah a few days each week and had noticed similar signs.

"I panicked,'' Whaley said.

A trip to the pediatrician failed to shed much light on the situation. The doctor watched a video of Hannah during an episode and thought she might have acid reflux but referred her to a neurologist for tests that eventually revealed infantile spasms and complex partial seizures.

In January 2009, at just 6 months, Hannah entered St. Joseph's Hospital in Tampa for extensive tests. An MRI revealed a lesion on the frontal lobe of her brain. Doctors prescribed ACTH, a hormone drug that cost $48,000 for two small vials. Fortunately, the bills were paid by insurance through David's company, Feld Entertainment, which operates Ringling Bros and Barnum & Bailey Circus.

David is an elephant trainer, accustomed to giving medical treatment to giant beasts. Now, he would have to give daily shots to his tiny daughter. Six weeks later, the spasms stopped.

About the same time, the family got some unexpected good news: Tabatha, a fifth-grade teacher at Sand Pine Elementary in Wesley Chapel, was pregnant.

By July, Hannah's seizures were back, as many as eight a day. "She'd crunch her face up like Chucky Gruden,'' Whaley said, referring to Jon Gruden, the former Tampa Bay Bucs coach. "If she was standing, she'd fall. At the end, she'd make a horrible gasp and drool.''

As a School Board member, Whaley forced an intelligent approach to sex education and led the effort to create the Cyesis program, which helps keep pregnant teens from dropping out of school. And as she neared retirement, she inspired the community with her straightforward journal in the Times detailing her fight with breast cancer.

Now she geared up for another battle. She grew frustrated with the lack of information about Hannah's condition. She was alarmed that All Children's Hospital in St. Petersburg, one of the nation's premier facilities, had limited experience with it. But she did gather enough information and advice to conclude brain surgery likely was the only chance for Hannah to avoid lifelong developmental disabilities.

In October 2009, the family welcomed Maddie. Three months later, neurologists recommended surgery to remove Hannah's lesion. The family researched the top hospitals for such operations and settled on Miami Children's. "They had done about 300 of these operations,'' Dave said. "We were amazed, and comforted, by their casualness.''

On Sept. 13, 2010, two months after her second birthday, surgeons removed part of her skull and attached 40 electrodes to her brain to pinpoint the lesion. Doctors warned the family that its removal might leave Hannah with paralysis on the right side of her face and her right hand.

After the six-hour operation on Sept. 17, Dave and Tabatha were cleared to visit their daughter in recovery. Dave started singing the nursery rhyme This Old Man. Hannah reached out with her right hand to grab her dad. She smiled. Dad kept singing and weeping.

No paralysis.

• • •

Monday afternoon, the family gathered in Tabatha's classroom at Sand Pine to talk about their ordeal and celebrate a third anniversary without seizures. They want their story to help others.

"We had no idea what was going on in those early days,'' said Tabatha. "Parents need to make sure they question early.''

Hannah, now 5, just started kindergarten at Sand Pine. Faculty and staff circled around the family during the crisis and are thrilled to welcome her.

She has some difficulty using scissors and writing with her right hand. She struggles a bit to put on socks or dress herself, and when she runs her gait is not smooth. But she's happy and smart, reading on a third-grade level and counting by 2s, 5s and 10s.

"The doctors are pretty well amazed by her recovery,'' Marge Whaley said. "It's unbearable for any parent to decide on brain surgery for their child, but without it Hannah would have stopped developing. Now she is really great, one of the neatest kids you'll ever meet.

"God had his hand in this all the time.''

Wesley Chapel girl's grave brain disorder ends with happy recovery 09/10/13 [Last modified: Wednesday, September 11, 2013 1:22pm]
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