- The Washington Times - Tuesday, October 15, 2002

Anna Novak had heard of cleft lips and palates, but she never had thought they would affect her loved ones. When doctors explained that her third child would be born with both birth defects, she was shocked and scared. Mrs. Novak, 31, and her husband, Mike, who live in Falls Church, began to consider the options for treating the baby as soon as they received the unsettling news.
"We were very upset," she says. "I didn't know anyone who had it. You see people with it, but not very often."
About one in 700 newborns, or 5,000 children per year in the United States, are born with a cleft lip or palate, according to the Cleft Palate Foundation in Chapel Hill, N.C. Sometimes they have a combination of problems, such as a split in the upper lip, the base of the nose, the roof of the mouth and the back of the nose.
Although a cleft is not a medical emergency and causes no pain for the infant, it is vital to have it repaired for the child's self-esteem, eating and speech. Children born with facial clefts usually need surgery and dental care, along with speech and other therapies.
After Mrs. Novak's baby, Michael, was born in August, they began visiting Dr. Deirdre J. Maull, who is in private practice in orthodontics and dentofacial orthopedics in McLean. She also is part of the craniofacial program at Inova Fairfax Hospital for Children.
Despite advances in the field of cleft surgery, Dr. Maull says it cannot completely solve multiple problems encountered in patients with clefts, such as imperfections in appearance, growth, speech and dental occlusion.
To prepare for Michael's upcoming surgeries, Dr. Maull has been shaping his face through nasoalveolar molding, which takes about four months to complete. The molded plate, similar to a retainer, is inserted in the mouth, and a nasal stent extends into the nose. The device is secured to the baby's face with rubber bands that are taped to his cheeks.
The apparatus slowly repositions the child's mouth and nose, taking advantage of the plasticity of cartilage that infants have during the first few months after birth. Because the skin will already have moved partially back in place before surgery, it will not have to be stretched, and significantly less scarring will occur.
Dr. Maull says the nonsurgical repositioning increases facial symmetry and stability, which may lessen the number of surgeries the child has later in life. She is one of few doctors in the country who have begun instituting the procedure before operations occur. It was developed in 1988 at the Institute of Reconstructive Plastic Surgery at New York University Medical Center.
The initial operations can be performed without completing this process, but the results might not be as favorable, she says.
"Some kids heal better than others," Dr. Maull says. "It won't make him look like he never had a cleft, but you'll have to look hard."
After Dr. Maull finishes her work, Dr. Stephen B. Baker, a plastic surgeon at Georgetown University Hospital in Northwest who specializes in adult and pediatric craniofacial and pediatric plastic surgery, will begin his part of the treatment. He also is part of the craniofacial program at Inova Fairfax Hospital for Children.
When patients are about 3 or 4 months old, he repairs their cleft lips. He waits until the children are about 9 or 10 months old to fix the palates, which gives their faces a chance to grow.
If nasal surgery is needed, he usually straightens the nasal tip at age 7. Between ages 7 and 9, he grafts a bone to the upper jaw so that the child's teeth correctly break the surface of the gums. After the face stops growing at about age 15, he usually performs a nasal operation that optimizes the shape of the nose and aids breathing.
Although children with cleft lips and palates require lots of care, the conditions are the easiest facial deformities to correct, Dr. Baker says.
The exact cause remains unknown, but children may inherit the cleft from the genes of one or both parents. If a parent had a cleft lip or palate, there is a 4 percent increase in the chance that the first child would have the defects. If a couple's first child has the condition and a parent has it, there is a 9 percent increase in the possibility that a second child would have the disorder.
Dr. Baker says parents who are told that their unborn child has a cleft should not consider abortion. Doctors can fix the cleft with surgeries, usually leaving just a small scar on the child's lip.
"You should see the look on the parents' faces when the cleft lip is done," Dr. Baker says. "They are really happy. Then, they realize it's not a big deal. The distance you can take these kids is phenomenal."
Susan O'Connor of Falls Church, whose 8-month-old son, Patrick, had cleft-lip surgery with Dr. Baker, says she is completely satisfied with the outcome. Patrick also went through the nasoalveolar molding process with Dr. Maull. His palate surgery is scheduled for Nov. 5.
"I was very relieved after the surgery," Mrs. O'Connor says. "We were expecting a good result, but the result we got was absolutely phenomenal. People that don't know him will say, 'Oh that's why he has that line on his lip.' Any medical professional who sees him is just astonished."
The hardest part is getting through the first year, says Paula Miller of Fairfax, founder of Virginia Smiles, a support group in Northern Virginia for about 25 families with children who have clefts.
One specific challenge is feeding the child, Mrs. Miller says. Because a baby with a cleft lip may not have enough sucking power to breast-feed, mothers probably will need to invest in nipples that assist the infant in eating.
Swallowing is complicated in a baby with a cleft palate because of the hole in the roofof the mouth. Nasal regurgitation is common and should not cause panic.
Mrs. Miller knows this from experience because she had to feed her son, Michael, who was born with a cleft lip and palate in September 2000. Michael is one of two identical twins. His twin brother, Matthew, never had the complication. Mrs. Miller, who never had the disorder, also has two other sons, Jonathan, 5, and Alex, 12, without the defects.
"We really felt sad," Mrs. Miller says. "All of our other boys are beautiful and perfect. We didn't know what it was or where it came from. It really put a damper on the pregnancy. I really felt so alone. I was dealing with so much. I was overwhelmed."
Now that the experience is in the past, Mrs. Miller says she can put it in its proper perspective. No matter what lies ahead, she says, the worst is finished. Hardly anyone notices the birth defects since Michael underwent three surgeries performed by Dr. Michael Boyajian, chief of plastic and reconstructive surgery at Children's National Medical Center in Northwest.
Michael's treatment plan did not include nasoalveolar molding. When he was born, Mrs. Miller did not know about the option, but she says she still feels Dr. Boyajian's work was successful. However, Michael will need to see a speech therapist because of delayed speech. Although his face is now anatomically correct, he needs to retrain his body to function properly. He also may face more cosmetic surgeries in his adolescent years.
"I never thought I'd have a baby with a cleft lip or cleft palate," Mrs. Miller says. "It's really been a wake-up call for us about what's important."
Dr. Stephane Corriveau, a plastic surgeon in private practice in Chevy Chase, volunteers his time with an international nonprofit organization called Operation Smile in Norfolk. He has taken nine trips overseas to underdeveloped countries to donate his services through the group. The association works in 22 countries. It sponsors about 4,000 surgeries a year for people with cleft lips and palates who lack the funds to have the procedures.
Those individuals who don't have the operations to fix the clefts are typically shunned, Dr. Corriveau says. Universal's feature film "Red Dragon" alludes to the cleft condition as being the prime cause of the psychopathic killer's destructive behavior. Many cleft patients and their families have been offended by this implication.
Also, calling the condition a "hare lip" is considered derogatory, according to the Cleft Palate Foundation. Many people associated with the deformity were upset that J.K. Rowling chose to use that terminology in the second Harry Potter book, "Harry Potter and the Chamber of Secrets."
"It's vital to get it fixed," Dr. Corriveau says. "It's unacceptable in this society, but overseas, kids are hidden from society. Their families don't acknowledge them in the world."
Dr. Robert Rubin of Malibu, Calif., chief medical officer with Operation Smile, says he is most pleased when the organization influences foreigners to learn to perform the surgeries themselves. Last year, Vietnamese doctors completed about 311 operations in their country. Volunteers in Colombia have set up their own training center through the association. Professionals in Panama also have begun to complete many procedures on their own.
"We are changing lives by putting smiles on faces," he says. "Helping your fellow man is one person's greatest reward."


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