Phoenix Children's Hospital saves Kaitlynn Bryson from retreating further into her body

PHOENIX - At 5 years old, Kaitlynn Bryson was your typical little girl -- playing, laughing and running. She also was talking. Not just learning her ABCs, but other languages too.

"She could speak Spanish, she was learning Mandarin Chinese,” says her mother Carrie. That was 2006 and life was good for Carrie, Don and their only child.

But then things started to change. Don remembers it happening.

"When she started her feet going windswept to the 9 o’clock position and then trying to walk,” Don described. “What is that?!"

It was a question that would take a long journey to answer, each curve in the road another detour that led to a dead end. Carrie also remembers it all.

"Orthopedic doctors, neurologists, she had a battery of tests, MRIs, CAT scans, EKGs EEGs EMGs spinal taps, genomics tests, everything was completely normal,” said Carrie. “They (doctors in Virginia) were completely stumped.” 

But Kaitlynn was starting to slur, and her muscles began to twist and spasm. Over the next four years, Carrie says her vibrant child retreated into her body. 

"She couldn't feed herself, she couldn't bathe, she couldn't toilet, she couldn't dress herself, she couldn't walk, could no longer even talk," Carrie says.  

She was trapped in a world where she was losing all ability to communicate with those around her. For all of them, the silence was deafening.

Doctors in Virginia would diagnose her symptoms as primary dystonia, a neurological disease in which your brain and muscles quit communicating properly.

Muscles twist and spasm out of control, contorting your body in sporadic movement. Dystonia is also a rare disease with no cure and few solid answers.

"They couldn't tell us what kind because all the genetic testing came back normal,” Carrie says.

“It was like being in a round house. You wait until a door opens and then shoot down that hall and then there's another round house and you just wait and see what happens next," recalls Don.  

The couple felt powerless to help their child return to her formal self, and each month it was getting worse. 

Then a miracle happened. Carrie got a new job in a new state -- Arizona -- and the family’s journey to help Kaitlynn brought them to a new set of doctors, this time at Phoenix Children's Hospital. It also gave them a new feeling they hadn't experienced in a very long time. Hope.

"Meeting Dr. (Ratan) Bhardwaj and feeling for the first time his energy and passion, he's doing this because he wants to help children," Carrie exclaims.

"This poor girl, her hands were so dystonic that her fingernails were actually going through her palms," recalls Bhardwaj.

In September, under the direction of Dr. Bhardwaj, Kaitlynn would be the first dystonia patient at Phoenix Children's Hospital ever treated for her disease with a new procedure called Deep Brain Stimulation, or DBS. It would take a massive effort by an extremely qualified team.

 "We would have myself from pediatric neurosurgery, an excellent neurologist named Dr. (Johan) Samanta, Dr. (Ewa) Brandys, who's our wonderful physiatrist” and several others, says Bhardwaj.

Carrie and Don had heard of the procedure, but for them it was a last option. 

"The fear of hitting the wrong spot, it’s brain surgery, right," asks Carrie. 

"The total outcome of possible death," warned Don. 

But Dr. Bhardwaj has done this procedure with great success in adults. 

After carefully mapping Kaitlynn's brain and pinpointing exactly where two electronic probes would be placed deep inside, those probes were put in place, along with a battery pack that will stay implanted on her side.   

"With Kaitlynn it was pretty amazing, we turned her on the first thing we could see after a couple days is she could open her hand for the first time," says Bhardwaj as he smiles.  

Kaitlynn improved quickly in six months.

“She can completely feed herself, brush her teeth, comb her hair," beams her mom. 

Also, like a normal teen, Kaitlynn can now text with those hands.

"Here is this little 12-year-old girl stuck in her body and the words are just flowing out of her, things like ’I had DBS surgery to be more human,’" Carrie explains.

Her next goals are to regain her voice and someday step out her wheel chair and walk.  

Her parents and the doctors say both might be possible again, if she keeps working hard to rehab those muscles that had been twisted and in spasm for half her life now.

While the news is good, the journey doesn't end here.

It could take years, but so far the recovery seen in months is miraculous.

Carrie chokes up as she reflects on what the future holds.

"God brought us to Dr. Bhardwaj and his team for a reason and what they have done for her,” she says. “They've changed her life, forever."

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