Daily photo by Gary Lloyd|
Kayla Blackburn had surgery in Texas for a rare condition called brachial plexis. She was unable to move her right arm. Kayla has made great improvement since the operation.
She's doing better
Surgery helps toddler, 1,
regain movement in arm
A mother knows.
Kristina Blackburn of Decatur knew when her daughter, Kayla, was born that something was wrong.
“Her right arm flopped completely behind her and was still. Her other arm and legs were moving,” she said.
Daily photo by Gary Lloyd|
Kayla Blackburn plays with Tami Tubell, her physical therapist.
Another surprise Blackburn got that day, Dec. 30, 2005, was Kayla’s size.
“She weighed 10 pounds, 9 ounces,” Blackburn said. “We were anticipating a smaller baby.”
The size is probably what caused Kayla’s problem, which Blackburn would later know as shoulder dystocia, or stuck shoulder. This means that one shoulder and, less frequently, both shoulders of the baby are not entering the pelvis during the birth as they should.
According to some studies, shoulder dystocia occurs in less than 1 percent of all births and can lead to increased complications for the baby and the mother. For Kayla, it meant that in her short life she would travel a long road for a cure.
“The next day, her pediatrician said Kayla had a birth injury,” Blackburn said. “A week later, a specialist said it was a brachial plexus injury and that her condition is known as Erb's palsy. It could lead to paralysis. My husband, Jesse, and I started searching for help."
A specialist at Children's Hospital in Birmingham suggested a nerve transfer. The couple had previously contacted Dr. Rahul Nath, director of the Texas Nerve & Paralysis Institute and Nath Brachial Plexus Institute at Texas Medical Center in Houston. He has treated two other Decatur children. But the Blackburns hoped to stay closer to home.
"Dr. Nath asked for video of her. He wanted to see what she could and couldn't do," Blackburn said, "and the position of her arm. She was 3 months old, and she was just lying there."
Nath called to say he didn't feel Kayla needed a nerve transfer, but a mod quad, or a muscle surgery.
"The doctor goes in and reattaches the muscle to another place for better movement," Blackburn said.
Southwest Airlines donated the family a roundtrip flight to Houston and Nath did the surgery June 22, when Kayla was almost 6 months old.
"We waited that long to give the nerve a chance to heal on its own," Blackburn said. "If a child doesn't have back almost full arm movement by 3 months, you're not going to get by without surgery."
Blackburn said her daughter is one of the youngest children that Nath has operated on and "I think she was lucky because she was so young."
Blackburn said that the day after surgery, he removed Kayla's splint and "she actually lifted her arm completely up. She had never lifted it before. We call Dr. Nath our miracle worker. Kayla's injury was not life threatening, but she is our baby. We wanted to give her the best outlook on life that we could and if this injury had not been treated, it would have slowed her down drastically."
Kayla was in the hospital for three days and she had to wear a Statue of Liberty splint to bed every night for six weeks.
"It covers from the belly button to the top of the chest, and it holds her arm up like the Statue of Liberty," Blackburn said.
Technically, according to her mother, Kayla has been in therapy since she was 2 weeks old.
"As a baby, she never could crawl because of her lack of arm strength. She started walking on Halloween, the day after she turned 10 months old, and never looked back," Blackburn said.
Before Kayla was 3 months old, Tami Tubell, a physical therapist, began working with her in a program called Early Intervention through the state Department of Rehabilitation Services. Tubell comes to the home weekly for up to an hour, putting Kayla through a series of exercises to increase her arm strength, such as having her crawl into a plastic tunnel and retrieve toys, to bear weight on her arm.
"She's attentive and isn't afraid to use her arm," Tubell said. "She'll come off my services soon."
Thursday, Tubell will video Kayla and send the tape to Nath for a re-evaluation. Picking up where Tubell leaves off will be Sandy Groger, an occupational therapist who'll sharpen Kayla's fine motor skills. Groger will come twice monthly and could work with the child until Kayla is 3 years old or older, according to her progress.
"I do feel Kayla will need a second procedure, a bone surgery called triangle tilt," Blackburn said. "It will correct deformities caused by lack of movement of the arm."
She said at Christmas, her daughter put her right hand to her mouth but that she still can't supinate or rotate the hand so that the palm faces upward or forward.
"She went from basically having a paralyzed arm 6 months ago to using it," Blackburn said. "Most people wouldn't know she had a problem, but she still can't open up her right hand."
Blackburn said surgery costs totaled about $107,000, including a $5,000 upfront payment.
"Our insurance paid less than $15,000. We have in an appeal to get more of it covered," she said.
"We have had at least five benefit yard sales and raised about $1,200. That includes people who would come up and make a donation. She was important to them, too, although they didn't know Kayla. We will never forget their kindness."
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