UAMS Pediatrics - KIDS FIRST Program

Carley Smay was born in Huntington Beach, California, at a healthy 7 lbs, 3 oz, in September of 2005.

But within three weeks of her homecoming, her mother, Kim, could see that something was very wrong.

"She was laboring too hard to breathe," Kim recalled. "I took her to the pediatrician, who said she probably had croup and to give her cool, moist air."

Kim tried the home treatment for one day. When it failed, she brought Carley to the emergency room.

Doctors kept the baby in the hospital for 14 days performing tests before they pronounced a diagnosis: Carley had a subglottic hemangioma, a large mass of blood vessels at the lower part of the larynx that obstructs the airway and causes difficulty breathing. The severity of this rare condition ranges from harmless to fatal depending on the size of the mass.

In Carley's case, the situation was dire.

Carley began a roller coaster of treatments at a nearby Arkansas Children's hospital in California. Over the course of 18 months, she endured an intense regimen of steroids and 15 surgeries.

In 2007, the Smay family relocated to Arkansas to see Dr. Charles Bower at Arkansas Children's Hospital. He performed two final surgeries to unblock Carley's airway.

The Smays then began their new life in tiny Mountain View, Arkansas. But their daughter's journey to good health was far from over.

At 19 months old, Carley's life was no longer in danger, but the long months of treatment had taken their toll. She had spent her time and energy recovering from surgeries instead of developing speech and motor skills.

Kim remembers struggling with her daughter's delays.

"She could walk, but she couldn't talk. She could only say 'Mommy' and 'Daddy,'" she said. "She wasn't eating or drinking well, so she always had to have a bottle. Her fine motor and occupational skills were way behind."

Still new in town and reeling from Carley's 15 grueling surgeries, the Smays then faced the daunting task of rehabilitating their little girl.


Finding Help at KIDS FIRST

The Smays soon found that help was just around the corner. Two months after moving to Mountain View, Kim drove past a small brown building on Maple Drive, just a mile from her home, and noticed "KIDS FIRST" on the sign outside.

"I had never heard of this place before," she recalled. "I didn't know what it was about, so I just walked in and asked."

After speaking with the director and learning about the program, Kim was confident that KIDS FIRST was the place for her daughter. Within days, the staff had thoroughly evaluated Carley. They prescribed speech, occupational, and physical therapy to help her reach her milestones.

Carley enrolled in 2007 at the age of 21 months.  Since then, a comprehensive team of nurses, nutritionists, therapists and teachers at KIDS FIRST have helped her make tremendous progress. The medical staff oversees her health care while the team of therapists works to advance her development.

Her speech therapist saw immediate gains: Carley spoke real words within two weeks of entering the program.

"Her teachers were writing all her new words on a marker board in the classroom, but they had to stop that," Kim remembered, laughing. "They ran out of room."

The speech therapist not only taught her how to speak, but also helped her learn to eat properly. She used oral motor therapy to strengthen Carley's muscles enough to eat regular food.

"She eats breakfast and lunch at school with no problem." her mother said. "Her nutrition is wonderful, especially when she's at school. She can even eat a hamburger now."

Her physical therapist worked to help her with movement. Though Carley had learned to walk when she started the program, she continued to struggle with balance. The therapist used a series of exercises helped her learn to steady her body.

"They would have her alternate from the floor to a raised board when she was walking," said Kim. "Once she learned to do that, she was fine."

Carley also had difficulty with tasks such as grasping small objects and stacking blocks. Her occupational therapist worked on Carley's hand strength to improve her fine motor skills.

"At first, she could pick up large objects, but not small ones," said Kim. "Now she has no trouble at all."


Moving Up

Carley is now three years old. She tested out of physical, occupational, and speech therapy at the age of two. She has since moved on to cognitive therapy, which helps her learn planning skills with tasks like puzzles and matching shapes.

The teachers and classroom staff at KIDS FIRST have rounded out the experience with hands-on education. Carley graduated to the preschool classroom in 2008 and her academic ability has advanced rapidly in the last school year. She can count to 20, recite the alphabet, and memorize the songs she sings in class.

"All her teachers just love her,” Kim said. “They do an outstanding job with her. And at the end of the day, she wants to go home with them, not me!"

Carley's mother especially praised her teacher’s efforts to incorporate speech therapy into the curriculum, and gave her credit for Carley's rapid progress.

"She would say, 'Turn your listening ears on.  Use your words,'" Kim remembered. "She was the one that really made it happen."

The Smays will have to move out of state again in the next few months, but Kim's first priority when planning the move has been to find a program like KIDS FIRST for her daughter. And when she turns five, Carley will attend Kindergarten in a regular classroom.

"I think she'll fit right into school," said her mother. "She can learn anything. I just can't believe the change in her. I absolutely give [KIDS FIRST] two thumbs up for that."