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'We were chosen for this'

By DANNY HOOLEY, Staff Writer

RALEIGH - Brian and Debbie Kale say they could not have asked for a better first child than 9-month-old Robert.

He's a bright-eyed, curious youngster with a shock of strawberry blond hair who likes attention and gets it with his cheerful personality.

"He's a happy boy," Debbie, 34, says. "I'd say, 95 percent of the time, he's hysterically happy."

But Robert is not like most toddlers. He was born with Apert syndrome, a rare genetic defect characterized by malformations of the skull, face, hands and feet.

It's a challenging condition that will result in multiple surgeries for Robert throughout his childhood. But the Kales refuse to indulge in self-pity, even after both lost their jobs when their companies declared bankruptcy last year.

Strong in their faith and with great support from family and friends, they see Robert's condition as a test they will pass.

"God doesn't make mistakes, not in my experience," Debbie says. "We're all created in His image, whether we've got fingers or not."

Apert syndrome can be inherited, or, as in Robert's case, result from a fresh mutation. It only occurs in one of every 160,000 to 200,000 live births. However, if Robert ever fathers children, they have a 50 percent chance of inheriting it.

The Kales were shocked when they found out Robert had the condition after he was born at Rex Hospital. There had been no difficulties or indications during pregnancy.

"The neo-natal [specialist] on call at that time told me it was Apert's about 30 minutes after Robert was born," Brian, 33, says. "By the time I heard 'syndrome,' my stomach was hurting badly. 'Syndrome' is a nightmare word for a parent. Syndromes are bad. There are no good syndromes. It was like a brick hit me."

When Debbie found out, she was lapsing in and out of anesthesia.

"Being kind of half-drugged at the time, I think I remember crying -- just because the first thought you have is, 'Oh my. Why has this happened?' " she says.

But the Kales say those feelings didn't last very long.

"Eventually you realize that this is a baby that's going to grow up to be like anybody else," Brian says. "He's going to have the same hopes and dreams."

Every Apert case is different, though there are sub-classifications. Robert's is Class 3, which means that his hands and feet were affected most severely, without any separation of digits. The condition has gradually improved with two limb surgeries that provided him with three fingers on each hand, and two toes on each foot.

Robert does not have the more severe cranial defects that Class 1 and 2 Apert babies generally are born with, which means he probably will need fewer than the up to 20 surgeries many patients receive by age 5. His parents figure he'll require about a dozen or, as Brian says, paraphrasing a doctor at UNC Hospitals, "as many as we can stomach."

Robert's first cranial surgery had to be done at 6 months to allow his brain to properly develop.

Early on, a child's skull is a series of floating plates that expand until about age 14, when they begin to fuse together into a solid adult skull. The sides of Robert's skull had already fused together, which would have caused his brain to grow abnormally without surgery.

The November cranial surgery released the fused plates to relieve pressure on the brain, and created a brow.

Robert's appearance may give those with untrained eyes the impression that he has Down syndrome. That's a misconception the Kales want to dispel.

"As he grows older, his face can have a lot of the same look, depending on the growth of the mid-plate region," Brian says. "[That] sort of puts him at a disadvantage [because] mentally, Apert's doesn't necessarily go hand in hand with any kind of mental diminishment."

The layoffs come

Brian and Debbie, who will celebrate their third anniversary in April, met as neighbors in Harrington Grove. Debbie's old house was across the street from Brian's two-story home on Mabledon Court, which they now share with Robert, their beagle Jack and their tabby cat Jasper.

In addition to the neighborhood, the two had something else in common. They both worked in the technology industry.

Until last spring, Debbie was a public relations representative for Koz Inc., an Internet software company in Research Triangle Park. Brian was a systems engineer for Pliant Systems, a broadband phone services company. Between them, they pulled in about $108,000 per year.

But Debbie was laid off shortly before Robert was born. Brian's layoff came not long thereafter. Then, unexpectedly, both of their companies went belly up.

"It's funny, actually," Debbie says. "His company and my company both declared bankruptcy on the same day -- the very last day in May."

Naturally, the Kales had been relying on the medical insurance provided by their respective companies to cover them. But with neither company still in business, all bets were off.

"When the company closed on the 19th of July, [Pliant] agreed to continue insurance coverage and COBRA coverage until the end of August," Brian says. "That was it."

UnitedHealthcare, the insurance provider for Pliant, offered a conversion plan that would have cost the Kales $1,300 a month -- rather steep for unemployed people.

Meanwhile, they had already passed on the COBRA insurance from Debbie's company, because they thought Pliant would still be in business.

With crucial surgeries imminent, the Kales knew they had to get insured soon. And with Robert's condition, it wasn't easy to convince a new insurance company to sign on.

Luckily, the Kales had a large support network to help them keep their spirits up. Friends and family started doing research on Apert syndrome and readily shared their newfound expertise.

The congregation of their church, Covenant Church of Raleigh, surprised them with a $1,000 gift. And Brian's mother, Lynn, who lives in Kernersville, started making phone calls on their behalf to help get them Medicaid.

"I was in such despair that I was trying to do anything I could," Lynn says. "I e-mailed every North Carolina legislator who had anything to do with health care or child care."

After getting the runaround again and again, she got in touch with Virginia Richardson, a team leader for Wake County Human Services.

But Richardson pointed out another problem. Medicaid requires that recipients in North Carolina make no more than $2,400 a month. The Kales were eligible for $3,000 in unemployment insurance -- if only for six months -- starting the second week of August. And Brian's last check from Pliant was due July 31, which made timing a crucial and tricky matter.

The Kales hoped that the week between Brian's last check and their first unemployment check would technically be considered time without income, time during which they could claim eligibility for Medicaid.

On Aug. 1, six days away from receiving their first unemployment check, the Kales went to Wake County Human Services hoping to take advantage of their small window of opportunity.

Richardson, who says she felt compassion as the mother of three herself, stepped out of her normal supervisory role and personally had them processed in about 30 minutes.

The Kales will receive 100 percent Medicaid coverage for a year.

Debbie says she was thankful for Richardson's help. Brian also credits his mother with their timely stroke of good luck.

"Watch out if a grandmother gets on the case," he says.

'Incredibly overwhelming'

The Kales also were invigorated by the team at UNC Hospitals that had taken on Robert's case, although their first meetings with them in the summer were exhausting, daylong experiences in which Robert's treatment plan was sketched out for the next 16 years.

"It was incredibly overwhelming," Debbie says. "The way they do it with the team approach, you see five doctors one day, you see six doctors the next day. You're seeing everyone from oral surgeons, to neurosurgeons, plastic surgeons, maxillofacial surgeons ... they're talking about jaw surgery that might in the distance be necessary.

"We drove home the first night and didn't say anything for three hours."

Robert's craniofacial surgeon, Dr. Wolf Loskin, has more than 40 years of experience in the field he helped pioneer in Pietermaritzburg, South Africa. He has performed surgery on more than 500 children with facial and skull deformities.

Loskin says he enjoys working with Robert, and he has high praise for the child's mom and dad.

"They have just such an incredible concern for him, and their caring for him has been really exceptional," Loskin says. "That's often the case, that children who are born with congenital abnormalities are often born to very special people."

With typical optimism, the Kales see even their unemployment as something of a boon. As Debbie puts it: "God's perfect timing in all things."

"The time Brian's had at home with Robert has been priceless," says Debbie, who adds that she'll miss having Brian around when he gets a new job, which he is actively seeking.

Most of all, the Kales are thankful for Robert.

"We know that Robert is ours for a reason," Debbie says. "We're humbled and honored by the fact that we were chosen for this."

Staff writer Danny Hooley can be reached at 829-4772 or

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