Children with cleft defects find treatment, hope

Three-year-old Eddie Clarke of Plainview loves cars and trains.

So it was not surprising, his father Paul said, that one of the first words he clearly enunciated was "monorail," which he saw on a trip to Disney World in Florida.

Paul and his wife, Ann, adopted Eddie from China when he was 22 months old.

Born with a cleft palate and lip, Eddie didn't speak. He communicated by banging his head on the floor and yelling when he was hungry.

"You take this oath to God that you're going to provide for this kid," said Paul Clarke, speaking of Eddie's biological family. "They looked at him and said we just can't. That's gotta be the hardest thing in the world."

Since being adopted, Eddie has had an operation to repair his lip and to put in a prosthesis to cover up the gap in the roof of his mouth. That and ongoing speech therapy has turned Eddie into a happy, talkative little boy, his father said.

Delicate treatment

Eddie is one of about 21 children adopted from China, Korea and Russia with cleft lips and/or palates and treated at North Shore-Long Island Jewish Health System's Hagedorn Cleft Palate and Craniofacial Center who were on hand for a party Monday at the Great Neck center.

The center, founded in 1953, was one of the area's first, and has become an international destination for families with children with cleft lips or palates. It takes insurance when it can and gives care for free if there is no insurance.

Linda Dunckley, nurse coordinator at the center, said the idea for the party came from one of the doctors who thought it would be a good way to bring families together who share similar problems and triumphs.

The center treats and follows about 1,400 children from birth to age 18 born with cleft palates or lips - about 30 of whom were adopted from abroad, Dunckley said. Cleft lip and cleft palate are among the most common of birth defects worldwide. They happen when the tissue in the roof of the mouth and upper lip don't join before birth, resulting in a defect that can range from a small notch in the lip to a groove that runs into the roof of the mouth and nose.

This can affect not only the way a child's face looks but also can lead to problems with eating, talking and ear infections.

With surgery and treatment, most children with cleft lip or palate do well. But the surgery is a delicate process.

"You can easily destroy parts of the face," said Pamela Gallagher, medical director of the center. Treatment can involve multiple surgeries, aftercare and speech therapy.

In many cultures where treatment isn't readily available, children can be shunned. They are also more easily adopted - a reason why the center has seen an increase in the numbers of children adopted from abroad with cleft palates.

"I think it's easier to adopt a special-needs child rather than wait for the perfect child," Dunckley said. "It's a much faster process."

'Everything will be better'

That and simply falling in love with the pictures of the children were what prompted Marie McDonegh from Glen Oaks to adopt three children from Korea, two of whom had cleft palates. Her oldest, Siobhan, 15, adopted at 9 months, should be undergoing her fourth and last operation this summer to correct an overbite, her mother said.

"I don't hate that I have it," Siobhan said. "But I'll feel more confident. I'll like my looks better."

Last summer, on a family vacation, she met an older girl who'd had all the same procedures done, and the meeting made an impression.

"I feel like I should come back when I'm older, just show myself: Everything will be better," said Siobhan, a sophomore at the LaGuardia School of Performing Arts.

McDonegh's son Joseph, 11, who came to this country from Korea when he was 19 months, is also doing well. He too will eventually undergo about four operations.

"They are regular kids that cry and break your heart and whine and do everything all kids do," McDonegh said.

CLEFT DEFECTS

What is it?

Cleft palate and cleft lip are relatively common birth defects, occurring in about one of every 700 live births, often concurrently, according to the National Institutes of Health.

What does it do?

Clefts affect a baby's appearance but also its ability to eat, breathe and speak normally.

How does it happen?

Causes include genes passed from one or both parents, drugs, viruses or other toxins.

How is it corrected?

Treatment often includes a combination of reconstructive surgery, dental and orthodontic care and speech therapy. When possible, surgery is done when the baby is very young - 2 to 4 months old for surgery to repair the lip and 9 to 18 months to repair the palate.