Reaching Her Goals

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Loretta Courea

KaraJonesWhen Kara Jones takes the “throw-in” from the sidelines, the 9-year-old doesn’t hesitate to hoist the soccer ball high over her head and give it a mighty heave.

After all, she’s a star forward for the U-10 Galaxy Girls team, representing the best girl soccer players in her age group in Portsmouth. So everybody expects her to give it her best every time.

“She’s born for this sport,” says her dad, Dave Jones, proudly.

Actually, on the day she was born – October 5, 1994 – few would have guessed that her destiny was to shine as an athlete.

Kara’s mother, Dori, had suffered several complications of pregnancy, including toxemia, high blood pressure and gestational diabetes. Having already miscarried twice, Dori was desperate to carry this baby to term. So in the months before Kara’s birth, she turned to maternal-fetal medicine specialists and to a pediatrician who would see that her baby had the best care. “We selected Hugh McPhee as her pediatrician, and we’ve been grateful for that choice ever since,” Dori said.

Dori’s baby arrived six weeks early at Sentara Norfolk General with the CHKD nursery team and neonatologists standing by. The baby was unusually large – 11 pounds – and her shoulder became wedged in the birth canal during delivery. Even worse, her umbilical cord had knotted, cutting off her oxygen and blood supply. With just a faint fetal heartbeat, the delivery became a race to save the baby.

When she was finally delivered, she had an Apgar score (the standard measurement of an infant’s heart rate, muscle tone, breathing, etc.) of 1 out of a possible 10. The doctors from CHKD mounted an all-out effort to establish a heartbeat and breathing. As Dr. McPhee explains, “Minutes count in this situation. And in her case, the five-minute Apgar climbed to a healthy eight.”

With Kara stabilized, the medical team could now turn its attention to her shoulder, which was twisted backward with the scapula protruding like a wing. It was not broken, as they initially thought, but the injury – called a brachial plexus injury – signaled a challenging future for the infant.

The new parents soon followed their baby to the Neonatal Intensive Care Unit at Children’s Hospital, where they learned that brachial plexus injuries cause damage to nerves during the birth process, affecting muscles in the shoulder, arm or hand. Any or all of these muscles can be affected, and the extent of the injury depends on the specific nerves damaged. A pediatric neurologist in the NICU informed the Joneses that Kara’s specific injury was to cervical nerves C5 to C7 and is medically called an upper brachial plexus palsy – also known as Erb’s palsy.

“Somehow it didn’t feel like an insurmountable problem, especially given the fact that Kara might have died,” Dori said. “And those wonderful nurses in the NICU were amazing. They treated Kara like their very own. And Dr. McPhee was there every day while she was in the NICU. He really gave us hope.”

Throughout her first 18 months, Dr. McPhee took a “watchful waiting” approach to Kara’s arm and shoulder condition. “When a child is not using the muscles in the arm and hand, these muscles will be weak and the arm may not grow at the normal rate. So the parents have to begin therapy before the muscles become too tight and the joints stiff. Yet despite her parents’ efforts, Kara’s arm was beginning to have a contracture [stiffness].” So he recommended that Kara begin professional physical and occupational therapy.

Range-of-motion exercises established by an occupational therapist help keep the muscles and joints flexible for patients with Erb’s palsy. The therapist helps the patient and caregivers learn the exercises to continue the work at home, improving strength and arm use so the child can become as independent as possible with the activities of daily living.

“Kara has never thought of herself as being different,” her mother said. “Dr. McPhee told us long ago, ‘don’t baby her, expect her to do things and she will.’ So that’s exactly what we did, even though it was often hard to watch her struggle.”

Activities like combing her hair and putting on her clothes took more than the usual effort to learn. “She has to compensate, but she also has to use the arm as much as possible,” Dori said.

“For Kara, our challenge was to help her become more aware of her affected arm and use it as much as possible,” said Melody Harris, an occupational therapist at CHKD. “Having a weak arm that doesn’t function like the other one affects overall body awareness for patients with Erb’s palsy.”

“For some,” the therapist added, “that can lead to poor balance and spatial awareness, weakened reflexes and problems with overall strength and mobility. So when a bright child like Kara wants to perform on a normal level, she can find it somewhat frustrating. It took a great deal of hard work, motivation, dedication and perseverance for her to achieve what she has in her nine years.”

KaraJonesThrowThat is never more apparent than when this young soccer player is racing down the field weaving in and out of opposing players. Or when she throws the ball in from the sidelines. The required overhand motion presents a special challenge, which her parents say she has worked hard to master.

“She’s amazing,” her dad said with obvious pride. “She’s always acted as if she could do just about anything she wanted to do.”

Her therapist agrees. “She never has thought of herself as a special needs child,” Harris said. “That attitude and her parents’ constant support have been a blessing.”

A few years ago, when Kara wanted to learn how to ride her bicycle, her mother loaded the two-wheeler in her car and they went to visit her other CHKD occupational therapist, Andrea Harris. “Andrea helped Kara learn how to ride in no time,” Dori reported, “right there in the parking lot at CHKD’s Neuro-Developmental Center.”

Besides soccer, Kara loves swimming, a skill she learned in aquatic therapy with Andrea Harris. “I’m like a fish,” Kara chimed in. The strokes require special compensative efforts on her part, but the activity is excellent for strengthening her arm.

A third-grader at James Hurst Elementary School in Portsmouth, Kara has been on the “superintendent’s list” since pre-kindergarten. “She wants to be a teacher,” Dori said. “And we have no doubt she will accomplish that or whatever she decides.”

“She chooses her own challenges,” Dori said. “We just try to help her get where she wants to go.”

Dr. McPhee practices with Pediatric Diagnostic Center of the CHKD Health System.

This story was featured in the second quarter 2004 issue of KidStuff, a publication of Children's Hospital of The King's Daughters.

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