Yuma girl, 1, developing despite rare syndrome

By Mara Knaub

Yuma Sun

Published: Friday, May 13 2011 2:05 a.m. MDT

Cambria Flint is fed by her mother while sitting in her highchair at her home in Yuma, Ariz. on April 21, 2011. It might not be a big deal for most babies, but Cambria was born with Cornelia de Lange syndrome (CdLS), a rare congenital condition that makes it difficult to eat because oral muscles don't work well.

The Yuma Daily Sun, Jared Dort, Associated Press

YUMA, Ariz. — Soon after Blair Flint's daughter, Cambria, celebrated her first birthday, she surprised everyone by eating on her own.

It might not be a big deal for most babies, but Cambria was born with Cornelia de Lange syndrome (CdLS), a rare congenital condition that makes it difficult to eat because oral muscles don't work well.

For her first year, Cambria ate through a feeding tube in her stomach and her mom expected it to be that way for a long time.

"When we left the hospital they told us she would never be able to eat on her own," Flint said.

But Cambria has not used a feeding tube for weeks and is completely oral feeding.

"It was overnight. It's like she said, 'Check this out.' She eats everything — oatmeal, fruit," her mom said.

"She skipped the bottle. We tried the pacifier with food, she was not interested," Blair added, noting that she tries to "help" by putting the spoon in her mouth.

But then again, she's also teething, which means she puts everything into her mouth.

When the Yuma Sun first profiled the Flints a year ago, Cambria had recently come home from the hospital. Born March 30, 2010, to Syd, now 22, and Blair, 27, at Yuma Regional Medical Center, she weighed 5 pounds, 11 ounces and was 18 inches long.

She was flown to University Medical Center in Tucson and kept in the neonatal intensive care unit for almost three weeks.

Once back in Yuma, the family was filled with uncertainty. They had never heard of CdLS before Cambria's birth and had to research it.

They learned that common medical issues include gastroesophageal reflux disease, heart defects, seizures, feeding difficulties, vision problems and hearing loss.

Most people with the syndrome are smaller than usual and have typical facial characteristics such as eyebrows that meet in the middle, long eyelashes, a short upturned nose, thin downturned lips and excessive body hair.

Learning about the syndrome helped them relax, knowing that — with proper medical care — Cambria can enjoy a long, happy life.

"When we first brought her home, she was all delicate, and we worried and were nervous. She was so small, we were afraid we would hurt her," Blair Flint said.

But Cambria has shown them how resilient she is by improving by leaps and bounds. She's gaining weight, finally reaching 8 pounds, a big improvement for her.

"She doesn't grow like other babies," Flint noted. "People ask about her size. They think she's a new baby. I used to go into a large spiel about CdLS, trying to raise awareness. Now I just give them a brief explanation of the condition."

Cambria is also showing her personality.

"She's so funny. She likes to play games like peek-boo. She loves storytime. She looks at the pages. She likes anything with animals and texture or bright colors," her mom said.

Cambria likes going on walks and being outdoors. She knows exactly what she wants and doesn't want. She doesn't like baths, for example.

She's also a "little stubborn," according to her mom, and showing her sense of humor.

"Sometimes when I laugh, she starts smiling and laughing," Flint said.

It's a silent laugh because she still doesn't make any noise, only a series of squeaks.

Nevertheless, she's learning to communicate with sign language. She knows how to sign "more" when she wants more food. And when she doesn't like something, she signs "more" and shakes her head like saying "no more."

Get The Deseret News Everywhere

Subscribe

Mobile

RSS