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Family awaits cleft palate surgery for infant son

All of her training as a nurse couldn't prepare Vipra Patel, 28, for the shock of learning that her first baby, a boy, likely would be born with a cleft lip and palate.

"I was in tears" when doctors at Greater Baltimore Medical Center showed her the results of an ultrasound at 20 weeks of pregnancy, she said.

But a co-worker at Johns Hopkins Hospital told her, "You're blessed that God gave him something that you can fix."

On Jan. 30, at the end of National Birth Defects Awareness Month, the baby, Kian Patel, now three months old, will have surgery at GBMC, where he was born, to fix his lip and flared left nostril.

And later this year, Kian will have more surgery to fill the huge hole in the roof of his mouth.

Although cleft lips and palates are the most common congenital head-neck deformities, the surgery is still uncommon, said Dr. Randolph Capone, a member of GBMC's so-called "cleft team."

GBMC, a regional referral center for cleft cases and one of five hospitals in the state that have a cleft specialty team, brings about 5,000 babies a year into the world, Capone said. Only about one in 800 has a cleft defect, he said.

Capone, a facial plastic surgeon and director of the GBMC-based Baltimore Center for Facial Plastic Surgery, said the initial surgery, which lasts 90 minutes to two hours, is not life-threatening or "super-invasive."

The hospital has seen more cleft cases in recent years, because ultrasounds are becoming more standard and higher quality.

"It's very standard surgery," he said. "Most of these kids do quite well."

But Capone conceded, "The prospect of operating on three-month-old can be scary to some people's thinking."

Vipra Patel and her husband, Rakesh Patel, 31, owner of the Wine Underground, a wine store in Hampden, are taking no chances with Kian's health. The Owings Mills couple even buys special baby formula that costs about $100 a month.

They said Kian, born in October, was colicky for the first month of his life, remained at his birth weight of about 6.4 pounds through the month, and cried constantly.

"That was hell," Vipra Patel said.

On top of everything, the family moved from downtown Baltimore to Painter Mill Apartments off Dolfield Road in Owings Mills five days after Kian was born.

"Bad move," his mother said, chuckling in retrospect.

Now, Kian weighs barely more than 10 pounds, the minimum weight required by GBMC for his surgery, his parents said.

"We cannot skip any meal for him," said Rakesh Patel.

He said his wife's health insurance at Hopkins will cover the cost of the surgeries, but that the couple has spent about $1,200 in co-pays since Kian was born.

"Every time you go to a specialist, it's $30," he said.

Rakesh Patel also noted that he works six days a week at the longtime wine store on Evans Chapel Road and can't help much with day care. The couple is looking to hire a nanny and is nervous because Kian won't be able to put anything in his mouth for 10 days after the first surgery.

Kian is expected to have a small scar on his lip that elective plastic surgery may minimize even more later in life.

"We make the lip scar look as good as it can," Capone said.

And the palate surgery, for which no date has been set yet, is longer and more involved, involving the suturing of tissue from both sides of his mouth to fill the hole. That surgery probably will be done around Kian's first birthday, Capone said.

But the Patels are cautiously optimistic that the worst may be over for Kian.

"We're just happy he's not like he was when he was a month old," Rakesh Patel said.

Kian, laying in a baby bouncer and wearing a Baltimore Ravens jersey, seemed like a happy baby Jan. 22. Framed photos of him were centered on one wall in the two-bedroom apartment. The 55-inch, flat screen TV that Rakesh Patel bought with his 2008 tax return money was tuned to the Disney Channel. Kian has been known to cry if they turn the channel.

"I like watching 'Criminal Minds,' but when he's awake, it's the Disney Channel," his mother said.

Copyright © 2014, The Baltimore Sun
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