SURGERIES, SUFFERING, SELF-ESTEEM

By the time most children turn 4 years old, the only hospital trip they may have made is when they received a bad cut, or maybe a minor burn.

To have been to the hospital for 10 surgeries by that young age is heart-rending, but that is just what happened to Jennifer Johnson of Midland, Texas.

Jennifer, now 13, was born with cleft palate, a type of craniofacial disorder in which the palate (the top part of the mouth) does not form correctly and is usually split in two. The mouth and sometimes the nose is affected.

If not corrected, these children have trouble talking, eating and breathing. Their mouths and noses may look split or crooked.

Jennifer had another problem that caused her head to deform as she grew. She was lucky to have had those surgeries, otherwise there would have been some larger problems.

"She would still have a very large hole in her mouth. She probably would have had a lot of feeding problems, her speech would not be as good as it is, although it is affected," said her mother, Carolyn Johnson.

"She would only have half a nose, her head probably would have continued deforming, and she'd likely be retarded now because of pressure on the brain. And she would have some hernias that would be giving her lots of trouble and a lot of things would be going on if we hadn't done it," Johnson added.

Support group

We interviewed Jennifer and her mother - along with other families - at Cher's Family Retreat, which was in Indianapolis last June. Johnson told us the retreat, held in a different city each year, was started in 1990 to help families of children with craniofacial disorders to cope by getting together with similar families.

About 50 families attended the retreat.

"It's very important for the siblings, too, because with the brothers and sisters you can imagine how (they) could feel - very left out with all the attention (to the sibling), getting surgery and going away, getting lots of gifts and pity," Johnson explained.

There are hundreds of different craniofacial disorders, which involved the face and/or head. Some require minor surgery while others can never be fully corrected and may affect the brain. They often involve abnormal growth patterns of the face and skull.

About 465,000 people each year are affected by some kind of facial disfigurement. While some conditions are caused by trauma, burn or disease, the majority are birth defects whose cause is unknown.

Cher has helped these kids a lot ever since her role in the 1986 movie Mask, about a boy with a craniofacial disorder. Jennifer and Cher met at a children's museum in Washington, D.C., in 1990. She described the singer as being a "really, really nice person."

Cher is national chairperson of the Children's Craniofacial Association, a nonprofit group whose mission is "to improve the quality of life for facially disfigured individuals and their families."

The boy in Mask had a severe disorder that resulted in his death. Unlike him, Jennifer's case could be corrected with surgery, and her physical appearance to us seemed really normal.

Not allowed to smile

Abby Misko, 5, of Wisconsin struggles with her disorder. She has had three surgeries and was recovering from the latest one when we met her. Abby's condition affects her face, especially her eyes and mouth. She is sight-impaired and has to learn how to talk.

Her last surgery removed muscles from her leg and implanted them in her face. Because of the surgery, she wasn't allowed to smile or touch her face or run around with other kids.

"At times it brings tears to her eyes," says her mother, Kelly.

"She actually pulls on her face and wants to know why she looks like a clown."

Jennifer has testified before Congress to get help for kids with craniofacial disorders. "I was only in the fifth grade, so it was kind of a pretty neat experience," she said.

Insurance companies sometimes don't cover the costs of surgery that they consider cosmetic. The Children's Craniofacial Association is trying to raise funds to help cover some of these costs, which are thousands of dollars for each surgery.

"The insurance won't pay for it all, and so we're trying to get that and we're also really trying to create some public awareness, as much as anything," said Johnson, who is on the parent board of the CCA.

One reason why medical care is so expensive is that surgery is usually performed by a team of doctors, not just one. These doctors have different specialties, such as eye reconstruction or dealing with problems of the ears and nose. Together, they can help fit the pieces back together.

Charmaine Allen's son Rush, 4, has had 13 surgeries. "We've worked with 17 doctors," she said. "When they work with a team they all can work together to give the best chances to the child."

Joey Dubyk, 8, was born with a cleft palate that went up the side of his face and through his eyes. Despite his 24 surgeries, his parents consider themselves fortunate.

"We're just glad that he's real healthy and that there's nothing else wrong with him," said his mother, Stephanie.

They are lucky in another way - their state, Pennsylvania, covers all the costs of his surgery.

Jennifer has three more surgeries ahead of her, to correct her hairline and nose and to bring her jaw forward. Johnson told us they have coped, but there have been some hard times.

"You have to deal with insurance all the time and try to see that they pay what they're suppose to," she said. "Financially it's hurt quite a bit."

Effect on parents

Money isn't the only hardship of having a child with this condition. It's hard for parents to see their children wheeled away for surgery.

"You, yourself, wish that you were the one having it and could take their place," Johnson said. "Recovery is tough, because they're all black and blue and lots of bruising and they're pretty bloody, too, because the head and the face, it bleeds a lot. But they recover very quickly."

Perhaps the worst thing is seeing people's inconsiderate reactions to your child. Jennifer remembers some of these experiences.

"When I was little, people would stare or something, or they'd like come up and ask me what's the matter with me."

Stephanie Dubyk has seen those stares directed at her son. "I think a lot of kids are not taught about kids with physical abnormalities - it's just not taught. So I would try to educate them," she said.

Johnson said Jennifer's experience has made her a very strong person. She described Jennifer as a champion for the underdog.

"She can't stand to have kids pick on other kids, so she's the type that would step in and cause that kind of action to stop. I'm real proud of her."

Despite her condition, Jennifer says she doesn't really feel different than anyone else.

"The only way I like to feel different is by the clothes I wear. I don't want to wear something that someone else is wearing. That bothers me."

Kelly Misko has some advice for people who first see a child with a craniofacial disorder:

"Please try to treat them as equal. Think of yourself in that face. Some of the children are so isolated, they don't get to communicate.

"There is a child inside."

EDITED BY: Tony Dale, 14