MARTHASVILLE — Sitting on the floor with her 1-year-old daughter, Kennady, Julie Thornton of Marthasville pulled out a binder she had transformed into a toy using strips of Velcro, a few puzzle pieces and colorful plastic rings.
"This is one of her favorites," said Thornton, opening the binder and letting Kennady get to work.
The toddler's eyes lit up as she reached for the puzzle pieces and put her muscles to work pulling them off. She laughed as she pulled rubber bands attached to the binder's center metal rings.
As Kennady played, Thornton made subtle gestures that kept the little girl from using her left arm. These kinds of activities are more than just play for Kennady — they're therapy.
"Everything we do throughout the day — playing, feeding, baths — we try to incorporate therapy into it," said Thornton.
"I'm constantly looking for new things she can do and ways to make it fun because if it's not fun or if she gets bored with it, she won't do it. And she has to."
Kennady has a condition known as brachial plexus palsy, an injury to the nerves in her neck that occurred during birth.
The brachial plexus is a complex set of nerves located on either side of the neck above the collarbone. The nerves branch off the spinal cord to control muscles in the shoulders, arms and hands.
The injury occurs during the birth process when a shoulder gets stuck (shoulder dystocia) either on the mother's pelvic bone or the sacral promontory.
When excessive traction is used to dislodge the shoulder, the delicate nerves can be stretched, torn or completely pulled out from the spinal cord. If the nerves are torn or pulled out, the baby will need multiple surgeries to correct it.
For some babies, a brachial plexus injury can lead to lifelong disabilities, limitations, struggles in daily living, extensive therapy, financial hardships, physical pain and emotional challenges.
Kennady was lucky in that her brachial plexis nerves were only stretched. But that hasn't made the last year any less frightening or exhausting for her family.
"We expect a full recovery for Kennady," said her dad, Micah Thornton. "But we didn't know that until recently. This is one of those things where they say, 'Wait and see.' For the first six months, they couldn't tell us what her prognosis would be."
In the beginning, Kennady's condition didn't look very promising. Right after she was born, it was clear there was a problem.
Kennady wasn't moving her right arm.
"I remember the nurse telling the doctor, 'Come look at this,' but the mood wasn't too serious, so we weren't worried," recalled Julie Thornton.
The first thought was that Kennady had a broken collarbone, but an X-ray found that wasn't the case. That's when the doctor told the Thorntons some of Kennady's nerves may have been stretched during birth.
The neurologist they met with later took the story a step further when he told them Kennady had Erb's Palsy, the most common type of brachial plexis where the upper part of the nerves are damaged. Infants cannot move their shoulder and keep their arms extended and turned inward. There is typically no movement after birth, but the baby will begin to move the wrist and fingers within a few weeks.
Kennady's "temporary paralysis" of her right arm lasted three months.
Specialized care for the little girl began while she was still in the hospital. The Thorntons kept her right arm pinned to her shirt to prevent it from being stretched or pulled even more.
"She was in a lot of pain," Julie Thornton recalled. "We could tell from her cry. But there wasn't anything we could do for her. We couldn't give her any medicine for the pain, so we did little things like rolling up washcloths to put under her fingers to keep her muscles from tightening up."
In addition to her right arm being paralyzed, Kennady had other manifestations of her nerve injury. There were bruises up and down her right arm, on her knuckles and ribs, and the right side of her face was swollen, said Julie Thornton.
Kennady's right arm paralysis continued until she was 3 months old — the age doctors want to see some bicep movement or else they begin to consider surgery. It wasn't until Kennady was 6 or 7 months that the doctors told her parents she definitely would not need surgery.
Kennady's therapy sessions began when she was just 8 days old. Initially, she was getting physical therapy once a week at St. John's Child Development Center on the campus in Creve Coeur.
"Kennady only received physical therapy during this time frame because at this age physical therapy and occupational therapy run together," explained Julie Thornton. "They work on pretty much the same things when the child is so young."
From 7 months to 10 months, Kennady started going to therapy twice a week — one day for physical therapy and another for occupational therapy.
"The physical therapy works with her shoulder to strengthen her arm, and the occupational therapy works with her fine motor skills, her ability to feed herself, drink from a cup, things like that," said Julie Thornton.
For the last two months, Kennady has gone back to therapy just once a week, alternating between physical therapy one week and occupational the next.
Every couple of months, Kennady also gets checkups at the Brachial Plexus Center at Children's Hospital, where she also sees physical and occupational therapists.
The therapy sessions continue informally at home.
"Every time we change her diaper, we have stretches that we do, range-of-motion exercises," Julie Thornton noted. "We stretch her arm up, forward, flip it up, down and out. We pull the top muscle. We flip her wrist up and down, stretch each finger, stretch her pectoral, that will keep her shoulder from falling forward."
When Kennady was very young, completing this series of stretches used to take quite a bit of time, said Micah Thornton.
"Julie had a notebook full of tips and pictures that she used to look at while she did it," he said. "Now it just takes her a few minutes."
The Thorntons are always looking for new play therapies that can help build Kennady's right arm and shoulder muscles. They have several suction cup balls and things they use to encourage her to reach and pull with her right hand. They put a headband on her head so she'll instinctively reach up to pull it off.
"Parents As Teachers has been good at coming up with ideas, too," said Julie Thornton. "Before our parent educator comes for a visit, she'll call and I'll tell her what we're trying to get Kennady to do, like, 'They're really wanting her to crawl now.' So she came up with this (rolling cylinder). It has pictures all over it and when we push it, Kennady wants to go after it."
The Thorntons do other things some parents would never dream of. They take the cushions off the sofas to try to get Kennady to climb up on them, and they encourage her to climb the stairs.
"We would love for her to do that!" Julie Thornton remarked. "It would be so good for her."
"I remember the first time I saw her sleeping with both arms up over her head. I ran and got the camera. I thought, 'This is amazing.'"
Now at 1 year old, Kennady has made such progress that most people would never know she had brachial plexus palsy.
"The hope is that by the time she's 3, we'll be able to see everything she can do," said Micah Thornton. "They expect a full recovery, but there may be some things she won't be able to do, like she may never be a softball pitcher."
There isn't any formal tracking system to know how many babies sustain brachial plexus injuries at birth, but the United Brachial Plexus Network out of Kent, Ohio estimates the number to be around 12,000 in the United States, or roughly three out of every 1,000 births.
That's more frequent than Down's syndrome, muscular dystrophy, spina bifida and as frequent as cerebral palsy, yet many people have never heard of brachial plexus.
And the most remarkable thing about brachial plexus injuries is that they are preventable, stressed Thornton.
"There are things doctors can do to make sure this injury doesn't happen," she said.
Julie Thornton is currently in a support group for parents whose children have brachial plexus palsy. She's learned a lot about the injury from Kennady's experience and her own research. Now she wants to share that information with others.
"We want to spread awareness about this injury," she said. "I would love to talk to a MOPS group or at Lamaze classes. We want to tell pregnant moms to talk to their doctors about this before delivery to make sure the doctor is prepared.
"There are signs to look for and things that can be done to prevent it," she remarked. "That's all we want. We don't want anyone to have to go through this."