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Babies with cleft lips get help from woman who’s been there

December 15, 2017

ST. LOUIS (AP) — Before Dana Kiley was born 38 years ago, her parents didn’t know she had a cleft lip and palate. Kiley would go on to have 18 surgeries to correct the birth defect.

Today, babies with cleft lips or palates are usually diagnosed by ultrasound during pregnancy, and most will need just three surgeries. Kiley, as coordinator of the cleft lip/palate and craniofacial team at Mercy Hospital St. Louis in Creve Coeur, guides families through the streamlined treatment process and shows them what they can expect for their children when they grow up.

“It’s nice for them to see me, somebody who knows what they’re going through,” Kiley said.

If the lips and roof of the mouth do not fully form in early pregnancy, the baby develops a cleft or gap that can range in severity. A cleft lip on one or both sides of the mouth can stretch to the nose and include a split through the upper gum line and, in rare cases, the cheek. Some children also have a cleft palate, a separation in the roof of the mouth that makes it difficult to eat and talk.

The St. Louis Post-Dispatch reports that cleft lips and palates are one of the most common birth defects, thought to affect 1 in 600 to 1 in 1,000 births. There were 77 children born with cleft lips and/or palates in Missouri last year, according to the state Health Department.

In most cases, the cause of the condition is unknown, although certain risk factors, including smoking during pregnancy and diabetes in the mother, have been identified. Some drugs used to treat epilepsy and acne, when taken during pregnancy, are also possible risk factors.

The first problem for babies with cleft lips or cleft palates is eating. The babies can’t generate adequate suction for a bottle or breastfeeding and typically need a specialized bottle that allows parents to squeeze milk or formula into their mouths.

Most of the babies will develop chronic ear infections and require tubes to drain fluid from their ears. They usually receive speech therapy, and most will need orthodontic care. Their medical team also includes mental health specialists if the children are teased or bullied over their appearance.

“It’s harder for cleft kids. The first thing you notice about anybody is their face,” Kiley said.

Kiley was working as an intake coordinator at a children’s home 14 years ago when she heard about the opening on the craniofacial team at Mercy. There she discovered she would be working with the surgeon who performed all of her procedures from birth, Dr. Jeffrey Marsh, and the same nurse practitioner, DeAnn Wilson.

Now, a three-surgery treatment regimen is standard for most babies with clefts. A lip repair surgery is performed at 3 months as an outpatient procedure to put the lip back together, restore muscle and help balance the nose. Surgeons close the roof of the mouth around age 1 in a more complicated surgery. When the children are 8 to 10 years old, they typically need a bone graft procedure to close the gap in their gums.

Some children need additional surgeries on their noses, lips or jaws. Steven Broombaugh, 17, had his fifth and final surgery Sept. 18 to bring his upper jaw forward and his lower jaw backward, closing a 15-millimeter underbite. Steven was born with a bilateral cleft lip and palate, meaning the separation occurred on both sides of his mouth.

At a recent event hosted by Mercy, the De Soto High School student spoke to families before a screening of the movie “Wonder” about a boy born with a craniofacial deformity. Steven told the crowd he was bullied as a sophomore in high school, but he got through it with help from his friends and family.

“As long as you accept yourself, you’ll live life to the fullest,” he said.

Dr. Earl Gage, a plastic surgeon, leads the cleft lip/palate and craniofacial team at Mercy, taking over for his mentor Marsh, who retired in 2015. Gage said he performs “happy surgeries” because he works with healthy children who have positive outcomes.

“You fix something that is not quite right in a kid and positively affect their life going forward,” he said.

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Information from: St. Louis Post-Dispatch, http://www.stltoday.com

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