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."
Cambria has regular speech, physical and occupational therapy sessions. She's learned to roll over but doesn't like to. As a result, she's getting a bald spot so she'll soon be sporting a helmet, custom-made because of her small size.
She can sit with assistance. She didn't like her high chair at first, but now she loves to sit there, playing with toys on the tray.
She's no longer on oxygen, but it's on standby, just in case. She's been doing well with her reflux issues, which are managed with a low-dose medication.
Her minor heart problems have been resolved, and the cleft closed on its own.
Cambria has also made two special friends. Her older half-brother, Flint's 4-year-old son, likes to put out her clothes and help put medicine in her tube.
"He likes to be a big help. When he's with his dad, he calls and asks, 'How's my baby?'"
Cambria also has also found a protector in the family's new pet, a miniature pinscher.
"He's really good with her. Sometimes he sleeps by her bed. Or when she's on her mat, she'll stick her foot in his face, he licks it and she's happy."
While the Flints are enjoying Cambria's improvements, they still want to help raise awareness of the syndrome. They didn't know much about it at first, and even some doctors were not very familiar with the condition.
Now Blair Flint's in touch with the CdLS Foundation and with other CdLS moms on Facebook.
"It's nice to have the support. Anytime I have a question, I go to Facebook and ask, 'Is this normal?'"
Flint has also received a lot of support from her employer. After an extended maternity leave, she went back to work at Lowe's on a part-time basis during the weekends.
"They've been so awesome, so sympathetic," she said, noting that it's nice to be home with Cambria during the week when the baby has doctor appointments and therapy sessions.Comment on this story
Syd Flint, who was laid off last year, is now working with his father as a graphic designer and occasionally takes the baby to work with him.
What's next? Blair Flint was happy to learn there is a special needs preschool in town. Cambria will be eligible to attend at the age of 2.
"So next year you will start," she said, snuggling with her daughter.
Information from: The Sun, http://www.yumasun.com