Family fights stigma about birth defects

LEWISTON, Idaho (AP) — Each night after tucking her 19-month-old son Jayton in bed, Tami Rowden of Lewiston logs on to her computer in the hope of encouraging parents who want to restore smiles to the faces of their children.

"God created him special, picked him out and made him this way for a reason," Tami said of her son. "Now I'm trying to get other people through the stages I had to get through."

Jayton was born with what medical experts call a craniofacial anomaly.

"When he came out," Tami recalls of the birth, "they said, 'Oh, it looks like a cleft lip and a palate.' "

Jayton's dad, Jeff Rowden, remembers how the arrival of his son immediately had him wrestling with thoughts of "when everyone called it a harelip."

The stigma. The teasing. The stereotypical lisp. The loss of self-esteem. All of it seemed too much. How could they protect their son from such anguish?

"In the old days, people were ashamed," said Jeff, 32, a salesman at Tyler-Kelly Trademark Motors in Lewiston.

Some children born with cleft lips and palates were put up for adoption. Others were institutionalized. Many went through life without corrective surgery.

But today, say the Rowdens, children like Jayton can have a bright future. Thanks to the Shriners Hospital network, Jayton and others can receive the kind of corrective and cosmetic surgery geared to restoring smiles to the faces of entire families.

"We just want people to know there's help out there and create some awareness," Jeff said.

"I'm a pathfinder for Idaho," Tami said of her volunteer work through Cleft Advocate, an online support network for educating and empowering families whose lives are touched by cleft lip and palate or other craniofacial anomalies.

Tami works through what's called Family-to-Family Connection, a computer bulletin board where people around the world can share their experiences as well as offer and obtain information and advice.

"When I had a question, 20 moms would get on and tell me their experiences," said Tami, 28, who works for Regence BlueShield. Now she's helping spread the word into places like the Lewiston-Clarkston Valley and the surrounding region.

About one in 700 babies is born with cleft lips and palates, according to statistics. Severity varies, but the hereditary affliction is considered one of the most common birth defects.

In Jayton's case, he was born with a parted upper lip and virtually no palate. The roof of his mouth was missing and his sinus cavity was exposed.