Shriners come through

Connor Wright is known by many as “C-man” because he looks like a little man.

When the 3-year-old shakes your hand, he looks straight into your eyes with his big, blue-green eyes and offers a solid, tiny fist.

Then he scampers off to play with his siblings, 4-year-old Jack and 2-year-old Peyton. Connor is very much a typical kid, and every bit a case of the middle-child syndrome.

Any child psychologist – or parent – will tell you that a middle child requires a lot of attention, and Connor gets his special time when he and parents Jack and Kelly Wright leave their Sycamore home early in the morning and head to Shriners Hospital for Children in Chicago. There, they meet Miss Gwen at the door. The nurse will ask C-man how he’s doing, to which the answer is obvious.

“Connor loves Shriners,” Kelly, 30, said.

Connor was born with a cleft lip and palate. It happens in the sixth week of pregnancy, when three cells that form the left, right and middle sides of the face come together.

“They figured out that in the sixth week, those three pieces don’t come together; they just stop shy,” Kelly said. “Everything in his mouth is open to his nasal cavity.”

So when the Wrights were trying to figure out the best care for their son, they visited many cleft specialists in the Midwest. Then they heard about Shriners.

The fact that it was free medical care didn’t matter, although they acknowledged that with two teachers’ salaries, they would be living with Kelly’s parents right now had they chosen a different care facility.

“I don’t think any parent would say, ‘We’ll do this because it’s free.’ It’s also what we considered to be the best care,” Jack, 35, said.


The Shriners care plan

When the Wrights visited other top-notch cleft programs in the country, they were bothered by something they couldn’t quite put their finger on.

“He wasn’t our son; he was a ‘cleft kid,’” Kelly said.

But Shriners, they thought, just sold vidalia onions and rode around in go-karts at parades. What could they know about craniofacial surgery?

Cleft lip and palate care is the most recent addition to the health care system’s disciplines. It started in 2005 with Chicago as a pilot facility.

Mary O’Gara directs the cleft lip and palate program, and said it naturally transitioned out of the plastic surgery department at Northwestern Memorial Hospital.

“Families are financially strapped for this kind of congenital birth difference,” O’Gara said.

Even if families are insured, coverage typically allows for one surgery on the lip and one for the palate, which is the roof of the mouth. Additional surgeries are not covered because insurance companies deem them cosmetic.

O’Gara knows the Wrights well, and she’s known Connor since he first came to Shriners when he was 2 months old. He had his lip repaired at four months, and palate surgery and ear tubes at six months.

But that’s not the end of it.

Though more surgery won’t be considered until Connor reaches adolescence, when his face and teeth structures have matured, he goes to Chicago twice a year for “cleft day” – a day devoted to cleft patients, where the entire medical team meets with each family to evaluate a child’s progress.

“You see the 1-week-old who has had nothing done and the parents are scared to death, and you have the 18-year-old who is coming for their final check-up,” Kelly said. “So for us it’s a great network to be able to talk with other parents about their experiences, and for Connor to see other kids like him.”

“We like to keep the kids through the program until their 21st birthday, so we get to see them graduate from high school, go on to college,” O’Gara said. “It’s a long-term commitment both the family and team make to each other.”


Progress and commitment

Connor’s resilience stems from his first days of life.

Before his first surgery, feeding was done by shooting formula down his throat with a syringe. His head had to be held at a precise angle, which Kelly and Jack got down to a science, or liquid would either choke him or seep out of his nose. His birth weight dropped three pounds in the first two weeks.

“He had to be patient with us,” Kelly said.

After that came the ear infections, the bleeding, the constant cleaning and ear drops. Cleft patients have fluid that builds up behind their ear drum, giving them hearing problems. This, in turn, affects speech development. Jack Wright described it as trying to hear “with your head in a bucket.”

Despite that challenge many kids have, Connor was on schedule with talking, with the help of a speech pathologist.

“He normalized so quickly that it’s been great to see him develop the way he is,” O’Gara said. “He has a sense of humor; he’s a real character.”


“There’s so much more”

It didn’t take long for the Wrights to realize the Shriners organizations is about more than onions.

While waiting in the hospital after Connor’s second surgery, Kelly thought something needed to be done to let other families benefit as they had.

“We always both kind of wanted to give back to our community some way, but there wasn’t anything that we really felt a deep strong tie to,” Kelly said. “So this was it for us.”

Last year, the couple and Kelly’s parents organized a golf outing, the Shriners Scramble, raising $18,000 for Shriners. The second annual scramble will be on July 24. A handful of Connor’s medical staff will be there, along with local Shriners.

“You see the Shriners out on the street partying and running their little carts up and down the streets, but the whole reason people are doing that is for the support of the hospitals,” said Roger Palmer, a past president of the DeKalb County Shrine Club.

That support began in 1922 with a charity facility for children with polio, and now includes 22 hospitals in the United States, Canada and Mexico.

Despite an endowment that declined from $8 billion to $5 billion in less than a year because of the sputtering economy, Douglas Maxwell, the newly elected CEO of Shriners Hospitals for Children, said he and other Shriners are confident the hospital system will be able to remain solvent in the long term.

The 1,300 Shriners who are members of the hospitals’ governing body this week rejected a proposal to close six facilities permanently, instead opting to explore downsizing the hospital system’s operations and to accept insurance payments for the first time. Also, Shriners International will explore selling or leasing some of its hospital real estate to reduce its $856 million operating budget, Maxwell said.

Palmer said that support like the Wrights’ fundraiser are needed now more than ever, and that support is twofold, the Wrights know.

“Vidalia onions, the funny hats, the parades and the little carpets. That’s really, honestly, that’s all we knew,” Jack Wright said. “There’s so much more.”

Shriners Scramble Golf Tournament

When: 7:30 a.m. and 1:15 p.m. July 24; dinner and raffle at 6:30 p.m.

Where: Sycamore Golf Club, 940 East State St. in Sycamore

Information: To register, visit www.theshrinersscramble.com.