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(Above) Four-month-old Grant Myers was born with a cleft lip and palate. He'll undergo corrective surgery in September.
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Karen Myers and her son, Grant, of King George County smile as they gaze at one another. Grant, who's 4 months old, wears an appliance that helps narrow the hole in the roof of his mouth while propping open his nostrils.
(Top) Karen Myers holds the prosthetic device her son Grant wears to help correct a cleft lip and palate. |
BY DONYA CURRIE
FOR THE FREE LANCE-STAR
Karen Myers of King George County found herself fighting back tears during a recent trip to a local Chuck E. Cheese pizza parlor with her two children.
Her infant son, Grant, was born with the most common birth defect in the United States--cleft lip and cleft palate, a largely cosmetic problem that will be corrected with a series of surgeries. But the horrified looks cast her way by strangers broke her heart.
"There wasn't one person who walked by that didn't stare," Myers said about her evening at Chuck E. Cheese. "It took all I had not to bawl. I just wanted to yell, 'My baby's not a freak!' I know people are just curious, but I don't know why it affects me so much."
The King George woman is not alone in her struggle to find normalcy as she cares for her child. An estimated one in 700 U.S. babies is born with cleft lip and/or palate, a birth defect that can vary in severity.
Ultrasound technology has allowed the majority of clefts to be identified before a baby is even born, paving the way for a multi-pronged approach to treatment that results in fewer surgeries and scarring than in the past.
"Early on, the technique for cleft repair wasn't as advanced as it is now," said nurse Lora Hindenburg, management coordinator for Fairfax Hospital's Craniofacial Program. "They [children born with cleft lip and/or palate] do really well these days. The prognosis is very good for them."
Clefts result from incomplete development of the roof of the mouth and/or the lip while a baby is growing in the womb. Typically, a child with cleft lip and palate will have surgery at 3 months to close the gaps in the lip, then at 9 months to close the roof of the mouth. Grant is having his first surgery in a few weeks.
At age 8 or 9, children with a so-called "complete" cleft will have bone taken from their hip and inserted in their jaw to give their teeth space to grow. Flattened noses are a common side affect as well and may be reconstructed once a child has reached adulthood.
Five-year-old Matthew Miller of Mechanicsville in Hanover County has already had five surgeries to repair his cleft lip and palate. And because his lack of a palate prevented his sinuses from draining, he was prone to repeated ear infections and has had tubes inserted in his ears six times.
"He just keeps on marching like nothing gets him down," Matthew's mother Kim Miller said.
Matthew faces more surgeries in the future, but he likely will show little sign of his birth defect other than a small scar on his upper lip.
For now, though, she is concerned about him getting teased as he starts kindergarten this fall.
"I'm worried kids will make fun of him," Miller said.
Like many affected children, Matthew is being treated with speech therapy to compensate for the defects in his palate.
"Really, the more challenging aspect than appearance is speech if the palate is involved," said Dr. Stephen Baker, a plastic surgeon and member of Fairfax Hospital's Craniofacial Program.
REASSURING PARENTS
Children from the Fredericksburg area usually are treated by Baker's team or, like Grant Myers, the craniofacial team at the Richmond Center for Facial Reconstruction.
There are also craniofacial programs at the University of Virginia Health Sciences Center in Charlottesville, two in Roanoke and one in Portsmouth.
Baker said cleft repair is one of his favorite types of surgeries because of the good results. Early treatment is key.
"Ideally, we meet parents before they deliver," said Baker, who with other members of the craniofacial team will talk with parents about what to expect once a baby with clefts is born.
Because parents are often scared and convinced they did something to cause the birth defect, Baker and his colleagues talk about the good track record for treatment, and the fact that although clefts do run in families, they are also such a common birth defect they can occur for no apparent reason.
"You tell them it's going to be OK," said Baker, who shows a slide presentation picturing a beautiful blonde cheerleader he operated on recently to repair her nose.
Generally, parents walk away from the presentation feeling reassured and more prepared for the treatment road that lies ahead.
Yet outside the reassuring medical arena, parents like Karen Myers struggle with a bundle of emotions.
'I'D RATHER THEY ASK'
Myers, Grant's mom, at first worried that she had caused her son's defect because she smoked during the early weeks of her pregnancy. Later, she found out there was a family history of clefts.
While that revelation eased her guilt, she still wishes people would temper their stares as she shops the aisles of Wal-Mart with Grant, or goes out for pizza.
Grant has two gaps in his upper lip, and he wears a space-age looking appliance in his mouth and nose that's held in place by tape crisscrossing his face.
"When people stare and they don't ask questions, that's disheartening," Myers said. "I'd rather they ask."
Donya Currie is a freelance writer
