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How One N.Y. Family Met the Challenge of an Oral Birth Defect

A mother recounts her son's struggle against cleft lip and palate

By Serena Gordon
HealthDay Reporter

MONDAY, Dec. 31 (HealthDay News) -- Angela Morales-Patterson first knew something was wrong when she heard a nurse gasp just after delivery of her baby.

Her son, Elijah Patterson, now 13, was born with a cleft lip and palate.

"I had expected everything to be fine," she said. "Then I heard a gasp from one of the nurses, but no one told us anything. Finally, they told us he'd been born with a cleft lip and palate and explained everything to us. As a new mom, you don't expect anything to happen to your child. It was a lot to take in."

What Patterson hadn't realized was that the surgery she had while in college, to fix what her mother referred to as a hairlip, was actually done to repair a very slight cleft lip -- something that an aunt had also had. Morales-Patterson, who lives in Clay, N.Y., has since had a second son, who was not born with either a cleft lip or palate.

Elijah had his first surgery when he was about 3 months old, his mother said. His cleft palate wasn't repaired until he was about 2 years old. He's also had to have tubes surgically placed in his ears numerous times.

"I've lost count of how many surgeries he's had," she said. "The ear tubes really help the ears drain so they're not in pain."

Morales-Patterson said that when the doctors were first telling her about the birth defects, they ran down a "scary list" of other things her child might have, such as hearing problems or heart conditions, but fortunately, she said, he's had none of them.

He did have a bone graft surgery in third grade, and he'll soon be going for another procedure on his lip to try to improve the way it looks. Once he reaches high school, she said, he'll need another surgery to realign his jaw. He's also needed to wear braces and have speech therapy.

At first, she said, it was tough. "Feeding was very difficult," she recalled. "We had a special bottle, and we had to hold it a certain way. When he started eating solids, I had to put them in the corner of his mouth so they wouldn't go in the hole. It was a little frustrating."

But what's been more frustrating at times, she said, is that the insurance companies have not always understood that her son isn't undergoing any of his treatments for purely cosmetic reasons. She's had trouble getting reimbursement for braces, she said, even though they're medically indicated.

"It's not cosmetic, it's medical," she said.

"My advice to other parents is to push," Morales-Patterson said. "Be very pushy if you need to be."

She also noted the information and support groups available through the Cleft Palate Foundation.

"It's good to have someone to talk to so you know you're not there by yourself," she said. "And, they even have support groups for the kids."

More information

Find out more about the causes and treatment of oral birth defects here.


SOURCE: Angela Morales-Patterson, Clay, N.Y.

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