But others might have been alarmed by Jacob's appearance. While in his mother's womb, Jacob's mouth did not form properly, and he was born May 11 with a cleft lip and a cleft palate.

Over the next few years, the boy will endure surgeries, dental and orthodontic care to transform his appearance, closing the openings where the roof of his mouth and his upper lip did not join.

Cleft palate, with or without a cleft lip, is the fourth most common birth defect in the United States, with one of every 1,000 newborns affected. What makes the Fowles' situation fairly unusual is that Jacob's older brother, Daniel, also was born with a cleft lip; the firstborn son, David, was not.

Today, Daniel is an energetic, tall, tow-headed 3-year-old. There is no sign he began having operations when he was just 8 weeks old. The move to begin repairing cleft palates and cleft lips so young is part of a protocol at Primary Children's Medical Center, intended to treat children when they will have fewer memories of the experience and of appearing different.

Daniel had completed his scheduled surgeries when his parents learned his new sibling would have the same birth defect.

"Daniel was able to nurse," while Jacob could not, Kristin said. "When it happened with Jacob, it started all over again. I couldn't believe it. We thought it would be the same as Dan's. When Jacob came, his was a lot worse than Dan's."

"I didn't stop worrying until he was born.": Kristin discovered Daniel was going to be born with a cleft lip through an ultrasound when she was five months pregnant in 2002. She was studying social work at the University of Utah, and her husband, Tim, was working on his master's degree in clinical psychiatry.

The Salt Lake City couple met with a genetic counselor and learned their second son could be predisposed to other health problems, including Down syndrome.

"I was in graduate school, and my life just stopped," Kristin said. "I got online, and it was horrible. You see these graphic pictures and just think, 'My child's going to look like this?' I didn't stop worrying until he was born. The whole pregnancy I was thinking, 'Is he going to live? Is he going to have Down syndrome or some other disease?' ''

Experts believe the majority of clefts are caused by a combination of genetics and environmental factors. Clefts are most common in Asians, and boys are more affected than girls. They are more prevalent in white children than black children.

Neither Kristin nor Tim has a family history of the birth defect, or knew much about it. "We're thinking there is some genetic component between the two of us," Tim said.

"I knew a girl when I was young in my neighborhood who I played with who had it, and that was my only exposure. I remember thinking how strange she looked," Kristin said.

After four months of dread, Daniel was born healthy, with a cleft lip but a fully-developed palate.

"When he was born, it wasn't as bad as we expected," she said. "The reaction from family was, 'Why did this happen to you?' ''

As for strangers: ''We got some stares with Daniel, but nothing like Jacob because his was more pronounced,'' Kristin said.

"It will make his life better in the end.": On the eve of Jacob's first surgery, when he was just 7 weeks old on July 1, Kristin was confident about the skill of his plastic surgeon, Louis Morales, but still apprehensive.

"You always worry, 'Is he going to wake up from the general anesthesia?' '' she said. "I think, 'Why do I have to change him?' I think he's beautiful now. He's perfectly happy, and we're going to inflict pain on him. But I know it will make his life better in the end.''

Morales fitted Jacob with a prosthesis to bring his gum, lips and palate together. Kristin hoped Jacob might be able to breast feed after receiving the prosthesis, which looked like a tiny chain across his mouth. But he still needed a special bottle that allows milk to flow at a rate comfortable for him to swallow, because he could not suck.

On Aug. 25, Jacob underwent a second surgery, over about two and a half hours, to fix his lip and nose. His appearance changed drastically after that operation, which closed the gap in his lip. Morales fitted him with a new prosthesis that fits the shape of his mouth. When he is older, doctors will take a bone graft from his hip to fill in his hard palate.

Although the couple has endured multiple surgeries with the two boys, the fear of putting their children under general anesthesia never subsides.

"It doesn't get easier with any surgery," Kristin said. "You're still nervous about the risk of death, even though it's a small chance."

Jacob will have his next operation when he is 8 months old.

"He's doing quite well," said Morales, who sees patients at Primary Children's Medical Center and at his Murray office. "He had a fairly extensive unilateral cleft lip and palate. His lip repair went very smoothly."

Morales performs about 100 surgeries a year on babies with cleft lips or palates from throughout the Intermountain West. He is one of the most active surgeons in the specialty in the United States, and developed the initiative to start operations earlier in life.

"We developed our own protocol here," he said. "Over the years, I thought there might be a better way to take care of these kids. We get them in younger, and start doing their cleft surgery as early as 4 to 6 weeks of age."

He also sees patients in their 30s, 40s and 50s who want surgery on their lips, noses or jaws to fix cleft lips or palates that went untreated as children.

Beginning surgeries early: Repairing clefts at an early age reduces the stigma and teasing some people have experienced. Daniel is unaware he was born with a birth defect because his operations came so early in life. When Daniel turns 4, X-rays will reveal whether he will need additional surgery.

The Fowles believe his operations have made Daniel more resilient. "I think he's more tolerant of pain," Kristin said. "Dan will fall down and just jump right back up."

As for Jacob's future, he will likely need speech therapy to help him learn to speak clearly.

In the meantime, Kristin is trying to set up a support group for parents of children with cleft palates or lips, to share medical information and just talk.

"Having a child with a cleft, the hardest part for me is the stares from people and their reactions," she said. "I want other parents to be able to talk about that. And the doctors are so busy, they don't have time to answer all the questions parents have."

Jacob and Daniel have had health problems related to their clefts, such as frequent ear infections, eye problems and congestion. Despite the challenges, the Fowles are considering adopting a baby girl with the birth defect from Korea or China, who might otherwise go untreated.

"These children are healthy, they just have a facial deformity," she said.

chamilton@sltrib.com

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Kristin Fowles can be reached by e-mail at kristin.fowles@gmail.com.

How common are clefts in Utah

Where is more information or help available?

Cleft Palate Foundation

http://www.cleftline.org

Utah Birth Defect Network

http://www.health.utah.gov/ birthdefect/

Cleft Palate and Craniofacial Clinic

Primary Children's Medical Center

100 N. Medical Drive

Salt Lake City, Utah 84113

Phone 801-588-2787

A clinic coordinator can discuss feeding options and share pictures of babies before and after surgical correction.

State Early Intervention Services

44 North Medical Drive

PO Box 144720

Salt Lake City, Utah 84114-4720

Phone 801-584-8226

Toll Free 800-961-4226

http://www.utahbabywatch.org

Assessment and therapy is available statewide to help families of affected children from birth to age three.

- Source: Utah Department of Health