It is difficult at any age to learn about rejection, denial, and
disappointment, but for children born with a cleft lip and palate,
becoming a social outcast is far too common. As Erika Celeste reports,
an American teenager in the southern state of Mississippi is doing her
best to help kids with clefts overcome their difficulties.
Claire Crawford has grown up like many American teenagers. The 17-year-old loves to read, play tennis and do artwork, but she's also a little different because she was born with a cleft lip and palate.
The facial birth defect - in which the lip and the roof of the mouth do not fuse properly - affects about one out of every 700 babies worldwide. Besides the social stigma of facial deformities, these children often have trouble feeding, because they cannot form a proper seal to nurse or suck on a bottle. They are also at a higher risk for upper respiratory and sinus infections, and later often need speech therapy.
Depending on the severity of the deformity, children often undergo multiple surgeries to correct the jaw and soft palate, and to help teeth come in properly. "Even though my scar wasn't that noticeable," Claire says, "it was part of me and I had surgeries all the time." She had to have nine surgeries.
The surgery that started a mission
The operation she had when she was 12 changed her outlook. Surgeons took a piece of bone from her hip and grafted it to the roof of her mouth to stabilize her palate. Claire remembers that it hurt a lot, and she could not walk for a couple of weeks. "But I also realized when I looked around and saw all of the gifts and flowers for me, I realized how lucky I was. I realized I could do something for other kids who were like me."
Claire didn't know how she could help, so she began researching on the Internet, and found the Cleft Palate Foundation. On its home page, the Foundation was selling teddy bears with stitches in their lips, just like a scar from cleft palate surgery.
That struck a chord with her, since she remembered having a stuffed animal with her for each of her surgeries. "You can't take your mom past the doors for the [operating room]," she explains. "You have to have something else to hold on to. It reminded me of how important those stuffed animals had been. I realized that maybe if it had meant so much to me, that it could be something helpful for other kids."
Claire decided to see how many bears she could buy and give to local children facing cleft surgeries. She began to educate the community through speaking engagements and before she knew it, the project known as Claire's Bears took off.
She admits, "I never expected it to be such a big project. My orthodontist gave the money for my initial goal of 24 bears and within two months, I had raised enough money for 250 bears." But she didn't stop there; she continued to raise more money for Claire's Bears and send the stuffed animals all over the United States.
Bringing reconstructive surgeries to poorer countries
Then Claire learned about Operation Smile. The U.S. medical charity coordinates more than 30 reconstructive surgery missions annually in 26 countries, from Brazil, to Kenya, to India. Since 1982, it has helped more than 115,000 children.
While most American babies born with clefts get reconstructive surgeries in the first few months of life, children in many developing countries do not, and face a life of discrimination and isolation.
Claire knew she had to help. Earlier this year, she not only raised money to donate bears to Operation Smile, she went on a mission with its surgeons to the Philippines. "The children were just really sweet," she recalls. "They were all grateful for the opportunity to have surgery. They were nervous about surgery itself, but so excited about the chance to be normal." She gave each one a bear and went into the operating room with them. "They would fall asleep with the mask on and a bear in their arms."
Pediatrician Paul Ruff - who has worked closely with Claire and her charity - says for kids who often carry deep emotional scars, this one act of kindness can be life-changing. "I think when kids get this bear that has the little scar on its face, that it's been through this surgery, I think that's something that reminds them that one, they are special and two, that it's going to be okay. That they can get through it, other people have gotten through it and Claire is a great testimony to that."
While reconstructive surgeries are fairly straightforward and inexpensive, Ruff says researchers are still trying to determine why clefts occur and how to prevent them. "There's some genetic factor," he explains, "but that may be just a genetic predisposition to an environmental factor."
Back home in Mississippi, Claire Crawford is still doing her best to help kids with clefts in the United States and around the world. She began a club at her school to raise money for Operation Smile. To date, it has raised over $10,000, enough money to give 42 youngsters a reason to smile.
Claire says it shows that teenagers can make a global difference. "I'm continuing to do that and so long as there are kids born with a cleft, there's a need for bears, and surgeries."