A few days after enduring her third brain surgery, Palatine teenager Kelly Ryan was resting not so comfortably in intensive care when something went terribly wrong.
Her feeding tube became blocked, and her heart rate dropped dangerously low. Medical personnel flooded the room, frantically pounding on her chest.
Kelly’s parents, John and Debbie Ryan, were comforted by the last person in the room you’d suspect capable of a calming thought.
“Kelly couldn’t speak, but she grabbed my hand and she smiled,” John Ryan said. “The doctors are pounding on her chest and all that kind of stuff. But just that little smile she gave . . . she knew that everything was going to be okay. And how you could do that under those circumstances, I don’t know.”
That snapshot is typical of how the 17-year-old Fremd High School junior and pompon girl has dealt with the big picture — an ordeal her father calls “a series of nightmares.”
Three years ago, Kelly was diagnosed with a Chiari malformation, in which the back portion of her brain had slipped through her skull and into her spinal column. A portion of her spine was also digging into her brain stem, causing severe headaches, among other symptoms.
Two surgeries in 1996 provided temporarily relief, and a 12-hour spinal fusion procedure she had hoped to avoid was performed last August. For the next five months, she was forced to wear a halo brace around her head to immobilize her neck. On Jan. 12, the halo was replaced by a neck brace, which is scheduled to be removed Wednesday.
Discovering that life isn’t always fair hasn’t stopped Kelly from embracing and loving it unconditionally.
“Like her friends and teachers always say, `I don’t know how she does it, but she’s always smiling,’ ,” John Ryan said. “She’s always open and friendly. Half the kids in that school consider her their friend because she’s just got that kind of a personality.”
Kelly’s condition was discovered by Dr. John Grant, a neurosurgeon at Children’s Memorial Hospital in Chicago who performed the first two surgeries. Had the condition gone undetected, it could have led to progressive paralysis and eventually even death. She visited Grant after suffering severe recurring headaches, vomiting, loss of balance and numbness in her fingers. Grant estimates that on average one person in no fewer than 500,000 has Kelly’s specific type of Chiari malformation.
“I had my moments in the beginning when I was like, `Why me? I can’t believe this happened,’ ” Kelly said. “But I think I just figured out that there’s so much more to life. Just go out and have fun and enjoy the day for what it’s worth and take from it what you can.
“I’ve always been positive, but there are so many people I’ve met through this who have had so many worse things and they’re going to have their problems for the rest of their lives. I figure when I’m done with this, I’m done. And I feel so lucky that I wasn’t paralyzed and that they found out what it was.”
Doctors expect Kelly to lead a normal life with no further complications once her neck brace is removed. The only long-term effect will be a loss of some neck motion, estimated at 25 percent by Dr. Arnold Menezes, the neurosurgeon who performed the final surgery at the University of Iowa Hospital in Iowa City.
Kelly’s resilience has inspired family, friends and even strangers.
“She amazes me,” said her father, a wetlands developer. “I find that I can deal with problems at work a whole lot easier because I think, `This is nothing compared to what Kelly goes through.’ Her friends and her teachers tell me that she’s been a big inspiration to them.”
“She has made me a stronger person,” said friend Lindsay Norden, 16, of Hoffman Estates. “I look at life with a better attitude and don’t take anything for granted because you never know when something can happen to anyone — like to your friends or to you.”
Kelly credits her family — particularly mother Debbie, whom she calls her “guardian angel” — with providing the unwavering support and love she needed to survive the ordeal. Kelly also leans on sisters Shannon, 15, and Katie, 10; grandparents Don and Helen Ruth Shannon and an aunt, Maureen Leadley, all of Whitefish Bay, Wis.
No one outside of Kelly Ryan’s family has provided more support during her ordeal than Fremd girls track coach Lew Miskowicz. Kelly competed as a sprinter as a freshman and sophomore and hopes to participate in some meets this spring.
Miskowicz visited her at the University of Iowa Hospital, arriving on the day Kelly was scheduled to walk for the first time after the 12-hour spinal fusion.
Taking her by the elbow, the coach walked gingerly with her, timing one lap around the hospital ward. The time was recorded on a poster in her hospital room.
“Halfway through the lap, in this real raspy voice with her halo on, she turns her body and goes, `Hey, you’re slowing me down,’ and grins,” Miskowicz said. “She’s got a great sense of humor.”
Miskowicz calls Kelly a “major inspiration.” “I have seen half a dozen kids who don’t know her come up to her and say, `I thought I had problems, but I’ve seen the way you handle this and I really want to commend you for your courage,’ ” he said. “I step back and watch how she handles it. Not only is it cool that the kids recognize her, but she handles it so well. She says, `I’m no different than you. I just do it day to day.’ That’s courage.”
Other Fremd staff members have also been supportive. History teacher Larry Petrillo provided free tutoring, pompon coach Jane Richards named Kelly adviser for the junior varsity squad, and counselor Mary Schagrin provided a shoulder to lean on.
Because Kelly could not pull any clothing over the halo, Fremd’s pompon girls made a special Velcro vest for her and simplified routines so Kelly could perform with them at two football games.
“I felt like crying, it was so neat to see her out there so happy because that is really her love,” said Debbie Ryan. “She loves to get up and perform in front of people, and it was really neat to see that.”
Kelly first started experiencing explosive headaches during 8th grade at St. Theresa School in Palatine. At first doctors thought she suffered from strep throat, then mononucleosis.
“The headaches were terrible,” Kelly said. “In class, I would fall asleep a lot. It would just drain me. I was always in the nurse’s office crying. Sometimes I would just have to run out of class and lie down in the hallway because I couldn’t even hold my head up in class.”
The headaches are now gone, as is the cumbersome halo.
“The hardest thing was finding out who my true friends were,” she said, the smile fading from her face. “That was a really hard thing to figure out. Some friends were just amazing. They were always there.
“I’m just a normal kid. Even when I was in the halo, it was still me inside there. Sometimes I don’t think people realized it was still me.”
Now that the three-year ordeal is almost over, Kelly is excited about resuming some favorite activities. Doctors have given her permission to do whatever she can tolerate, and she plans on skiing, dancing and continuing to perform with the pompon squad as a senior.
Kelly hopes to one day become a grade school teacher or a psychiatrist because she wants to help others. But judging by the lives she has already touched, part of that mission has already been accomplished.
