Sunday, August 18, 1991
BEYOND AVERAGE:
A SERIES OF MISTAKES AT BIRTH LEFT BRENT OLSEN - AND HIS FAMILY - UNABLE TO GROW UP NORMALLY. THEY'VE PROVED THAT A NORMAL LIFE ISN'T THE ONLY ONE WORTH LIVING
The first light of morning dances off a bright cellophane windsock in Brent Olsen's bedroom. His eyes are already open as his mother, Terri, comes to remove the foam wedge between his legs and the plastic brace on his left hand.
While she showers and fixes coffee, Brent looks out the big window by his bed and listens to the radio. His body jerks into tic seizures, a routine part of his morning. They ease off after about 10 minutes.
When his mother walks back into the room and speaks - "hey buddy" - a smile breaks across his face.
Brent's birth 11 years ago was expected to be a routine delivery. But one error begat another at the hospital, the delivery turned into a crisis, and Brent was born blue and limp. Minutes ticked by, maybe seven to 10, before the medical staff could revive him.
Lack of oxygen severely damaged his brain. The Olsens didn't know it then, but their son would never speak, walk or even see them clearly.
A jury listened to nearly four weeks of testimony in 1984 before awarding him $15 million, an amount that staggered the medical community. After an appeal, the case was settled for a smaller amount, never made public. But it set off a maelstrom in the Kansas Legislature, where the question was whether to put a cap on malpractice awards.
Eventually the legislature developed a complicated set of caps. Some were declared unconstitutional, but others still stand, for example, a $250,000 limit for pain and suffering.
Back then, Kansas doctors and lawyers easily recognized the name "Brent Olsen." Now, seven years after the trial, the Olsens are not so much in the public eye. Their lives are more about sticking to a strict routine, planning for each outing and thinking about the future.
You don't hurry Brent.
"This is what we do for about 45 minutes," Terri says one morning as she begins to feed him breakfast - warm, thin oatmeal, the way he likes it.
For Terri more than anyone else in the family, life revolves around Brent. She is a homemaker; her husband, Bob, is an assistant U.S. attorney in Kansas City, Kan.
Still in his ALF pajamas, Brent sits in his wheelchair at his mother's side. Terri slips a spoonful of oatmeal into his mouth and waits as he moves his tongue around the food. He does not have enough muscle control to truly swallow or close his mouth.
"If I try to hurry him, he gags or coughs his food across the room," Terri says. During regular school days, when Brent's two brothers also must catch school buses, the routine in their Lenexa home must start at 5:30 a.m. In the summertime she and Brent get up around 6:30.
"Mealtime is one of the few things he can enjoy," Terri says, which is why she is careful to rewarm his food throughout the feeding and not rush him. That's also why she bristled recently when an acquaintance said offhandedly that Brent looked "so skinny."
Part of the morning routine involves exercising Brent in his waterbed, because he cannot move his own muscles. Bending his arms and legs in the morning, when his body is tight, is like pushing on a heavy door.
Terri changes Brent's diaper, then pulls on his shorts and a striped shirt.
"He loves this," she says, rolling him quickly onto his front while she tucks in his shirt in the back. She rolls him back and he turns up grinning.
She dots his neck with cologne, hugs and kisses him.
"Oooohhh, you smell so good."
She lifts her son into his wheelchair, and Brent is ready for the bus that will take him to summertime classes. A baseball cap attached to the wheelchair keeps his head from falling forward.
Around the corner from Brent's room, you can see the future. A sitting room and another bedroom are there, waiting for the day the Olsens hire live-in help.
Although it seems inevitable, Terri resists the idea, because no one cares for Brent quite the way she does.
"I run them off too fast," she says. "I'm too demanding. Bob thinks we should have live-in help soon. I say no."
So for now, the extra bedroom is unoccupied.
Brent looks like an Olsen. His face is rounded, topped by thick, dark hair like his dad's. His hazel eyes credit both his parents.
Seizure medication has thickened his gums, and his teeth are beginning to push forward.
Brent has attended Katherine Carpenter Elementary School in the Shawnee Mission district since he was 3, including a shortened schedule in summers, and he can stay until he is 21. Seven children were in Brent's room for the severely multiply handicapped, and they were attended this summer by a teacher and two paraprofessionals.
Much of the day involves exercising the children, changing diapers, offering snacks and dealing with lunch, an overwhelming scene with staff members feeding over two dozen children.
Many, like Brent, eat pureed food, and as much comes out of mouths as goes in. Teacher Amelia Mann keeps a laundry basket with towels and bibs nearby.
But back in Brent's classroom, there is time for art, occupational therapy and speech. Sitting on a mat beside Brent, Mann talks to him while she strokes his fingers and arms.
"Did you have a long bus ride?" she asks. "Aaahhh. Can you talk to me?"
Brent answers, "Aaahhhh."
"I like that when you talk to me," Mann says, rubbing his chest.
"Aaahhh," Brent says.
"Yeah, good job, Brent. Aaahhhh."
During a group session to work on vision, Mann snaps on a light box, moves colored patterns across the surface and encourages the children to look at and touch the brightness.
"Here's red, your favorite color," Mann says to Brent. "You're still looking. Good job."
A doctor once told Terri that her son was blind, but she knew better. She told him Brent's eyes sometimes followed her across the room, and he responded to lights being turned on. Vision specialists now believe he can see at least shadows and forms.
Experts also told the Olsens that Brent would function at a level no higher than that of a 3- to 6-month-old. But tests early this month showed that his mental abilities have progressed to a 9- to 12-month level - an exciting revelation for the Olsens.
At 3 p.m., Terri arrives to take Brent home because she thinks the bus ride is too hot. She looks around at the staff and shakes her head.
"I admire them so much," she says. "I'm the parent. I have to do this. But they do this by choice."
Back at home, Brent rests in his bed. His older brother, 13-year-old Ryan, plays a computer game. Seven-year-old Chris plays outside with neighbors, dashing in and out for cold water.
Terri thinks ahead to the evening meal. She also thinks out loud about what Brent might be doing now had things gone differently. He might be fighting Ryan for the computer or kicking a ball outside. He would be starting sixth grade.
Rage, guilt and acceptance have come in waves during the past 11 years. The darkest year was Brent's first, when his crying subsided only when he was being bounced, held and kept warm. He couldn't suck, so the Olsens dropped milk into his mouth, but he often brought it all back up, and they would start over.
As he grew, it became clear that Brent was not developing normally, and the Olsens asked for testing as he approached his second birthday. That's when their hopes were dashed.
Doctors told them Brent's brain was virtually dysfunctional from the stem up. They could see it for themselves on CAT scan pictures - a mass of dead brain cells. With proper care, they were told, Brent would live as long as a normal person.
Terri and Bob blamed themselves, each other, sometimes God. Terri relived the delivery again and again, feeling guilty that she did not know how to read the fetal heart monitor, guilty that she wasn't a nurse, mad at Bob because he didn't see these problems happening.
Bob worried about finances, day-to-day coping, planning for the future. And other family members blamed the doctor and hospital.
"I felt we had to have it investigated," Bob says. "If we never knew, then it would be a constant sore that festers and boils."
With their attorney, they began an investigation. They learned that one mistake followed another during Brent's delivery. Terri, with a small pelvic area, should have had a Caesarean delivery, especially with a baby as large as Brent, who was 9 pounds, 4 ounces. But a Caesarean was not performed, even though the baby showed signs of fetal distress.
Court testimony revealed this: Terri was given an anesthetic that made Brent's heart rate drop dramatically. Part-time nurses were in charge, and at least one did not know how to read the fetal heart monitor. The doctor had difficulty getting the baby out of the birth canal and, when Brent was finally born, did not properly resuscitate him with oxygen.
Terri remembers shivering on the delivery table, watching the medical staff huddle around her baby.
"All I could see was this little blue foot hanging down," she says.
Later that evening, the staff wheeled Brent by for a few minutes before he was taken to another hospital, where he would stay a month.
No one told the Olsens what might be ahead for Brent.
In later years, when Terri and Bob looked at records from the delivery, a phrase would jump out at them, one they both now recite incredulously, word for word:
"Mother and infant tolerated the procedure well with an excellent prognosis."
Even though it's evening, sunlight floods the Olsen kitchen and eating area, the most hectic part of the house.
"I practically live in here," Terri says.
Chris, the fireball of the family, swings his legs into the air, one hand on the counter, one on Brent's wheelchair.
The family gathers around the big kitchen table, and Terri feeds Brent as the rest of the family eats. Chris' mealtime comments anchor the family in American suburban normalcy. He wants ketchup on everything and complains that his rice looks like worms.
"Oh sick," Ryan says as Chris sends ketchup shooting out of the bottle.
At 13, Ryan is dependable, level-headed, a straight-A student. Bob says he's "too easy" and they probably take him for granted.
At an early age, Terri says, Ryan seemed to sense that things were different in his family.
"Ryan had to learn to sit off in a corner and play by himself," Terri says.
Brent has taught the family patience. Bob thinks Brent also teaches his brothers' friends about accepting people who are different.
By the time Brent was 4 years old, Bob and Terri were thinking ahead to the next child.
"We wanted a third one, but we also knew we had to have him for Ryan's sake," Terri says. "We planned for Chris and Ryan to grow up knowing Brent, wanting to take care of him.
"We've told them all along that if anything happened to Bob and me, it would be their responsibility. Brent's life is going to be a life of decisions." It's 7:30 p.m., Brent's bedtime. He starts the night lying on his stomach, and when Terri goes to bed, she will turn him on his side. Before morning, she might turn him again to his other side, then on his back.
Terri and Bob watch him from the doorway. She has been away from him perhaps a dozen nights in his lifetime. Last summer the family traveled to Washington, D.C., and for the first time, they left Brent in the care of others for a week.
But Terri worried about him, especially at mealtime. So this year, Brent went along on the family vacation to the Black Hills of South Dakota, as he has in the past. Terri took a small microwave along and fed him in motel rooms.
Donald C. Long, a friend who went to law school with Bob, saw spontaneity disappear from the Olsens' lives after Brent was born. Spending time away from him takes intricate planning.
"I admire their decision to keep Brent at home," Long says. "I don't know if I would have had the courage to make that decision."
Victor A. Bergman, the lead counsel on the Olsens' malpractice case, says, "The real proof of their dedication is in their conduct since they collected on the verdict. And that is harkening back to Terri's testimony in trial when she said she wanted Brent to be at home with the family. Now they could even afford to delegate a lot more of the work, but Terri and Bob still choose to do it themselves. I know they're trying to raise Ryan and Christopher to have a commitment to Brent so that he never has to be in an institution."
In spite of the daunting routine at home, the Olsens have gotten on with life. Chris and Ryan play soccer, and the family is active in church. This past year, Terri took classes at a local college and hopes to someday open a small business.
Always there is the future to think about, troublesome scenarios to invent.
"What's going to happen?" Terri asks. "What if Bob kicks off or I kick off and the other is left to take care of Brent? Or if he remarries? Is he going to marry a wife who can take care of Brent like I did? That kind of stupidity."
In many ways, Terri and Bob feel lucky. Because of the settlement, they can buy Brent the equipment he needs and keep him at home. They designed their five-bedroom house with wide hallways and doors, ramps and few steps.
"We've seen so many families that aren't as lucky as we are," Terri says.
The small gestures from the people who love Brent are perhaps the most moving - the pats and rubs, the way Chris and Ryan defend their brother to their friends, the way Terri holds him and stretches his curled fingers, the way Bob talks quietly to him after coming home from work.
"Back when we didn't have any kids and when we were first married, I was so selfish about doing things my way," Terri says. "I think Brent was given to me to realize that, 'OK, now you have somebody to be selfish with, who wants to be cared for, who wants your love and compassion.'
"I think Brent was given to me for a reason. I really do."
Toni Wood is a free-lance writer in the Kansas City area.
THE KANSAS CITY STAR
Section: STAR MAGAZINE
Page: 8
By TONI WOOD
All content © 1991 THE KANSAS CITY STAR and may not be republished without permission.
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