Lonely at the Top

A ‘Great Giant’ struggles to fit into a world that wasn’t built for him

St. Paul Pioneer Press © December 27, 1998

Rochester, Minn. — Svetlana Ladan’s dream home has doorways 9 feet tall, open-air stairways and ceilings her youngest son, Igor, can’t scrape with his scalp. And as long as she’s sharing a roof with Igor, Svetlana wants a big kitchen.

“Igor is always there when I cook, always wants something to eat, and I can’t move,” Svetlana says in her thick Ukrainian accent. “I try to turn around and all I can see is his butt. I tell Igor, `I am tired of looking at your butt, so you must leave.’ ”

Svetlana shakes her head at the image and laughs. Just as quickly, she withdraws her smile and looks away. It’s as if, just as in the cramped kitchen of her two-bedroom apartment, Svetlana can’t make room for happiness. With Igor, she has always struggled to wedge some joy through the grief.

Igor was an 11-pound newborn. By his first birthday, well after Svetlana first sought help for him, he was 3 feet tall and weighed 50 pounds. A few months shy of his fourth birthday, Igor had the height of an average 10 1/2-year-old. Just before turning 7, when he and his mother arrived at the Mayo Clinic in Rochester, Igor stretched nearly 6 feet 1 inches and weighed 219 pounds.

Surgeons removed a tumor attached to Igor’s pituitary gland. Then, through drugs, doctors pulled the reins on the growth-producing hormones that were likely to turn Igor into the tallest human on record. Still, at 16, Igor today stands 7 feet 5 inches.

His health is generally good and, predictably, a coach at Rochester’s John Marshall High School talked him into coming out for the basketball team. Igor tires easily, though, and his feet hurt when he runs.

He sometimes wears bumps and bruises from “Exit” signs and other eye-level obstacles that fly unnoticed over the heads of fellow students. In the school’s stairways, he steadies himself along handrails and carefully negotiates steps too narrow for his feet. The tops of his shoulders would brush the undersides of doorways if he walked through them upright. In class, Igor cozies up to desks built for use as display tables.

He’s embarrassed less by his height than with his bulk, exacerbated by the shots and pills he takes every day to control his hormones.

Igor still is inching toward the record books as the tallest living person in America. Doctors can do little with Igor’s tallest concern, to feel like a normal teen-ager. Svetlana wants the same, and she long ago surrendered her own happiness to give her son a chance at his.

Ways of the World

Igor has clear memories of his childhood in Kiev, Ukraine’s capital city. Sunny days on the beaches of the Black Sea. Plates of vareniki, potatoes wrapped in dough and boiled. Through it all, he remembers people staring.

“It’s always been like that, but it’s way worse here,” Igor says. “People are better mannered in Ukraine. They might glance at you for a second. But here, they don’t leave me alone. I hate going to the Mall of America. I just hate it.”

When it’s suggested that most people aren’t mean, but simply curious, Igor shakes his head.

“They don’t understand what it’s like to have 15,000 people asking how tall you are or what your shoe size is,” he says. “I just get red in the face, and I start sweating and stressing.”

Igor has only known what it’s like to live as an oddity, an object of attention. Like any teen, Igor longs for more connections with people his own age, to feel like he belongs. But his trust is fragile, and he’s quick to believe the worst intentions from strangers.

He once ventured through the mall armed with index cards he printed out from his computer. One side read, “I’m 7-foot-5, now leave me alone.” The reverse read, “If you ask my shoe size, I’ll charge you a dollar.” Igor says he handed a card to anyone who asked the same stupid questions. There also was the time, in eighth grade, when he responded to some teasing by pushing a classmate into a bucket of paint.

Those are rare outbursts. Even to strangers, Igor quickly sizes up as a gentle giant.

He has the rounded features of his mother — kind eyes, high cheekbones and a triangular jawline. Igor’s hands, which envelop most others in a handshake, are soft to the grip and touch. There are no sharp angles to his shoulders, elbows and knees, no stiff movements in Igor’s gait. When he moves through a doorway, much like the fluid motion of a drawbridge, Igor simply dips at the neck, contracts his shoulders a bit and rolls into or out of a room without breaking stride.

Igor’s voice comes across in a tenor belying his size, a pitch like that of any other teen-age boy. He has an open-mouthed smile, as if in surprise or wonder, and he’s quick to laugh at everyday goofiness. Schoolmates in Rochester, long accustomed to Igor’s plight and presence, greet him with the occasional “Hey Igor.” On the whole, he attracts no more notice than do the hundreds of other bodies students steer around between classrooms. Igor often sees the lack of recognition as slights, and he takes them personally.

“I used to cry at home all the time because I didn’t have any friends,” Igor says. “People say `hi’ in the hallways, but some people act like they don’t even know me outside of school. My mom says to just give it time and things will go better.”

A junior now, Igor lets his guard down only with a few tested and trusted teens, mostly around a Nintendo video game or a fantasy card game called “Magic: The Gathering.”

Brian Leslie, a wire-thin junior, is Igor’s closest friend at John Marshall. Brian and Igor mimic and make fun of teachers’ habits. When they pass a pothead, Igor and Brian suck up some air, hold in their breath, then laugh at their own silent joke. Brian often lets Igor borrow his Gameboy for a class. When Igor misses a day of physics, he catches up by checking out Brian’s homework.

“You think. You do the work. I write it down,” Igor jokes to Brian about their classroom relationship.

The friendship isn’t one-sided, says Brian, who considers Igor smart, funny, honest and loyal. Brian is close enough to Igor, too, to notice more than vertical distance between Igor and others at school.

“I don’t think a lot of people know how to act,” Brian says. “Igor’s a nice guy, nicer than almost anybody. But I just think a lot of kids see him as different — you know, just because he’s so big — so they don’t really give him a chance to just be a person.”

Jumping Through Hoops

Any teen who can “palm” a basketball likes showing off. Igor’s fingers curl around a basketball as if it were a balloon, and when Igor pulls up to shoot, the ball rests in his palm like a shot put. For someone so big, he has an amazingly soft touch. Igor toes up to the free-throw line and lofts gentle arches to the hoop.

Igor doesn’t particularly care for basketball. He’s played before, in a youth league, but even Igor knew he wasn’t very good. He didn’t know how to use his size and he had trouble making it up and down the court.

He quit playing four years ago because he felt like a circus attraction. Svetlana likened the attention to “an elephant walking down the streets of Rochester.” But Mark Glaeser, the bouncy, can-do coach at John Marshall High School, saw long-term potential.

“He told me he’d give me all kinds of candy bars,” Igor says dryly.

“Actually, I thought he’d enjoy it,” Glaeser clarifies. “And that’s the biggest thing, to belong to something, whether you’re 5 feet or 7-7. Isn’t that what every high schooler wants, to belong?”

Glaeser paid $340 out of the school’s athletics budget to customize Igor’s jersey and shorts. Out of curiosity, Glaeser slipped Igor’s jersey over his own body, and the hemline touched his ankles.

In the locker room before John Marshall’s first home game, Igor found a private place so nobody could watch him change into his new uniform. For the first time in his life, Igor felt his clothes were too big.

“This jersey is a dress,” Igor barked, his arms out wide. “I look ridiculous.”

The top draped halfway down his thighs, not out of line with the sport’s current fashion. The more Igor stewed over it, the more his discomfort grew. He didn’t want to go out there and be laughed at. When a couple of teammates tried helping him with the jersey, Igor slapped their hands away. He didn’t like them poking at him.

As players danced and dressed under the boombox din of Rob Zombie’s music, Igor holed up in a side office and fussed with his uniform. He finally tried jury-rigging the hemline beneath the rest of the jersey with a mix of safety pins and paper clips. Eventually, Glaeser showed Igor how to use his shorts’ drawstring. He’d never seen one before.

Igor didn’t practice with the team for long before calamity struck. First, Igor suffered a stress fracture in his right foot. Then, during one bad week, he fell twice, fracturing an elbow and chipping two of his front teeth. He doesn’t know if or when he’ll return to practice.

No Size Fits Tall

Igor’s mother doesn’t know what she would have done all these years if she hadn’t, on a whim, taken that sewing course during college. Svetlana buys material herself and stitches most of Igor’s shirts, pants and jackets.

“I don’t know why they call ’em `Big and Tall’ stores. They should call ’em `Short and Fat,’ ” Igor says of his efforts to shop retail. “The XXXXXLs aren’t long enough for me.”

Igor’s growth spurts are crises for footwear. Shaquille O’Neal once sent him a pair of size 21 sneakers, and Igor outgrew them in two weeks. Igor now owns two pairs of size 22 Nikes, but he soon had to slice openings up front, as wide as a smile, to ease the pressure on his toes.

He and Svetlana have looked for Birkenstocks and flipflops, and they’ve written Nike, Reebok, adidas and others for help. They even e-mailed Oprah. Nobody responded. Most manufacturers capable of customizing shoes for Igor wanted $1,000 or more. They finally found a shoemaker in Rochester to build ankle-high boots, size 23. They paid for the shoes with money from medical assistance.

The Ladans drive a maroon Plymouth Voyager customized for Igor, who earned his license last month. The rails holding the driver’s seat have been chopped down four inches, to give Igor a bit of headroom, and moved back so that when Igor scoots the seat as far as it can go, it’s pressed against the seat behind it. As it is, Igor struggles to squeeze past the steering wheel to enter the driver’s seat, and his wide feet often hit the gas and brake pedals at the same time. Igor knows when this happens by the grinding whir.

Svetlana sometimes drives Igor to Sam’s Club, where he works as a weekend cashier. At 5 feet 4 inches, Svetlana sits on a pillow and props her back against a sofa cushion to reach the pedals. All the while, Igor scrunches forward in the passenger seat, the top of his head pushing on the van’s roof.

When Svetlana can’t solve a problem herself, people from Rochester, it seems, often will. Someone built a bicycle for Igor. When Igor wanted to play Little League, someone else came through with an oversized batting helmet. An anonymous donor recently helped the Ladans pay for a 9-foot mattress. Until then, Igor slept in a bed extended by a stack of boxes, books and pillows — always kicked over at some point during the night.

When Svetlana tired of pedaling a bicycle everywhere, a man taught her how to drive in his Mercedes. And long before she secured a permit to work legally in this country, people hired Svetlana to clean houses and wash dishes. Several years ago, when immigration officials threatened to send the Ladans back to Ukraine, doctors and lawyers at the Mayo Clinic enlisted help from a state senator and Twin Cities attorneys, who rescued the Ladans from deportation.

The Meaning of Motherhood

Svetlana was an honors student with straight A’s before enrolling at the university in Kiev. There, she met Alexander Ladan. They married, and both found jobs as mapmakers with the Russian government. Their first son, Oleh (pronounced O-leg), was typical in every respect. Six years later, on Sept. 18, 1982, Svetlana gave birth to her second and last child.

Svetlana named her boys after historically prominent Russian royalty. She had no idea that in American pop culture, “Igor” is indelibly tied to Dr. Frankenstein and the “Monster Mash.” Igor couldn’t have arrived here with a more tragic name.

He was only 6 months old when Svetlana brought him to Soviet doctors, dashing from city to city looking for help. Doctors couldn’t miss the problem. X-rays showed a large white mass, a tumor attached to the pituitary, almost dead-center in Igor’s head. Doing something about it forced Svetlana through six dizzying, frustrating years of bureaucracy and physicians’ arrogance.

One doctor said he could attempt to remove the tumor, but with only a 5 to 10 percent chance for success. Another top surgeon abruptly canceled an operation. He told Svetlana that his conscience, balanced by the mother’s love and expectations for Igor, wouldn’t allow him to go ahead with such risky surgery.

Time was a factor. The tumor took up so much space that it lifted Igor’s brain, and its close contact with the optical nerve endangered Igor’s eyesight. Aside from physical growth, the tumor also threatened every other function of the pituitary gland. The tumor, however minutely, continued growing. Even slight changes could have profound, permanent effects.

The same doctors who offered such grim prospects were also loath to recommend help beyond Russian borders. They saw themselves as the first, last and best hope, Svetlana says, and some doctors were offended by Svetlana’s refusal to submit to their prognosis.

“You would fly to the moon,” one surgeon scolded her, “if you think it would help your son.”

All the while, according to Svetlana, her husband had all but removed himself from the family’s life. Married 17 years, Svetlana divorced Alexander Ladan. She still loved him, but she wanted more for her sons.

“Even if (Alexander) did not feel enough love for me, as a woman, I would give up that part if he was a good father,” she says. “I just tell myself he is not there, and that’s the way it will be in my life.”

Mayo to the Rescue

In the Soviet Union, at the height of Svetlana’s panic, an aunt she hadn’t seen in years called from the United States and told her about the Mayo Clinic. Svetlana’s aunt called the clinic, and Svetlana sent Igor’s X-rays and a short medical review to Rochester.

Dr. Donald Zimmerman, a pediatric endocrinologist at the Mayo, had specialized in pituitary disorders for 12 years when he heard about Igor. Looking at the material from Svetlana, Zimmerman saw right away that Igor was unlike anyone he’d come across before.

Zimmerman drew up a chart comparing Igor’s growth rate with that of Robert Pershing Wadlow, listed in the “Guinness Book of World Records” as history’s tallest human. In 1940, just weeks before he died at age 22, Wadlow measured 8 feet 11 inches. Igor was on track to surpass that.

Zimmerman wanted to make sure that didn’t happen. He made a special request to Mayo directors, then wrote Svetlana: The clinic would cover the costs of all surgery and treatment.

“I think if people need help, someone will reach to you and help,” she says. “That is how I raised. That is just way world work, I believe.”

Grateful for Mayo’s invitation, Svetlana still had to bring Igor to the United States. She needed approval from health and financial ministers, from the head of Soviet air travel and from immigration officials both in the U.S. and Soviet Union. She spent days in long lines without meeting anybody who could help her. On top of that, Svetlana had difficulty converting enough rubles for the U.S. currency she needed here. Nearly three months after receiving Zimmerman’s invitation, Svetlana bought two tickets to America.

“You just knock and knock and you bother them, and finally they get tired of listening to you,” Svetlana says. “I was just ready to give my life, and that was unconditional. I never consider, for one second, to give up and let Igor die.”

Svetlana believed she and Igor would stay in the United States for two or three months. Still, she never cried harder than at the airport, bidding goodbye to her mother and eldest son, Oleh. Had Svetlana known what was really in store, she says now, she doesn’t think she could have mustered the strength to step on that plane.

Doctor Meets the Giant

When Dr. Donald Zimmerman first met Igor, in September 1989, he thought the boy a bit “maladroit — slightly clumsy,” but not exceptionally awkward. Igor wasn’t in pain.

The tumor attached to the pituitary had grown to the size and shape of a walnut — about four times the size of the pituitary itself. The real problem wasn’t in the pituitary, but the hypothalamus, at the base of the brain.

Most growth disorders stem from a single molecule in a single pituitary cell that won’t turn off its production of growth hormones. Igor’s condition was far more dramatic. Rather than a kink in a single cell, Igor’s hypothalamus, just above the pituitary, was showering a stimulating hormone over all his growth-producing cells. That trait, Zimmerman says, marks all of humanity’s “great giants.”

Still, in Igor, stopping the tumor’s growth was the doctor’s first concern.

Igor began taking octreotide, which shuts off the secretion of growth hormones, and bromocriptine, to shrink the tumor by blocking the pituitary gland’s production of prolactin. Four months of injections and pills dissolved about a quarter of the tumor’s mass. Surgeons could then attack the rest of it.

Svetlana felt at once hopeful and helpless. She communicated with Zimmerman and others at Mayo through a research doctor who doubled as the clinic’s official interpreter for Russian and Czechoslovakian patients. But Svetlana often was left on her own to decipher what doctors were trying to tell her. Some of those moments came at critical times in Igor’s care.

She remembers having no interpreter by her side during Igor’s first major operation.

“Doctors are talking, and I had big open eyes,” she recalls, thrusting her hands wide in front of her face.

“I was nodding head, and they thought I understand. But I was hoping they could see that I didn’t, not at all,” she says. “If I knew what it would be like, I never would have come here.”

The tumor sat just behind Igor’s front sinus wall. Surgeons first went through Igor’s nose, removed a piece of bone at the back of the sinuses and sliced out as much of the tumor they could reach from the pituitary socket. About six weeks later, surgeons removed what was left of the tumor by tunneling through Igor’s skull, to get at the underside of his brain.

Without the tumor as a prop, Igor’s brain dropped into a normal, comfortable position. Radiation treatments over the next six weeks kept the tumor from growing back. Since the surgeries, Igor hasn’t grown any more swiftly than the average boy.

Still, the tumor left its mark, “smushing,” as Zimmerman says, all the other functions of Igor’s pituitary. Through drugs, doctors have since controlled his puberty, thyroid and adrenal gland.

Just after his surgeries, Igor required up to six injections a day. Svetlana administered the shots herself. She eventually had to be treated for sleep deprivation. Now Igor, much like a diabetic, gives himself the shots, along with other medication. He also chokes down fistfuls of vitamins his mom lays out every day. Igor can’t remember the last time he had a simple cold.

No Place Like Home

After Igor’s surgeries, Dr. Zimmerman told Svetlana she and Igor would have to stay in Rochester at least a year. Seeing the horror sweep across Svetlana’s face, Zimmerman pulled his estimate back to six months. Svetlana didn’t yet understand English, but she clearly understood the doctor: She and Igor weren’t going home anytime soon.

Her eldest son, Oleh, was still in Kiev, and Svetlana had to find a way to bring him to America. Oleh was 14 when he came here, about eight months after his mother and brother. Svetlana also fretted over when she would see her mother again.

“It was such huge shock that I just cry hysterical,” Svetlana recalls. “I couldn’t imagine. It was just such tremendous, awful stress. I wrote letters every day to all my friends. I would say clinic is great, treatment is great, stores are great, but stress is too great and I miss all of them and could not wait to go home.”

A university-educated cartographer back in Ukraine, Svetlana found no use in Rochester for her education and skills. She took jobs cleaning houses and washing dishes — work that still pays her bills — but it led to deep depression.

“I stopped using brain,” she says.

More than anything, Svetlana craved friends, people to have over for dinner, to visit whenever she needed company, people who spoke her language. She can’t remember how many nights, for years, she shielded her young boys from her tears.

“I still am so lonesome,” says Svetlana, 46.

“People my age, they can like me and respect me, but they cannot live with me because they are locked into family and children,” she says. “I thought it would be easier for children, because most of your close friendships build when you are young. But Oleh came here as teen-ager, not knowing the language, and he had nothing in life to show other teen-agers he has value. And Igor suffer from this all his life.”

During the first three or four years in Rochester, Svetlana simply waited for doctors to tell her it was OK to take Igor home. She would have put herself and her boys on the next flight to Ukraine. But during that time, the Soviet Union fell, and so did its ordered life.

Friends and family back home warned Svetlana about the social and economic turmoil in Ukraine. The drugs Igor needs to supplement his wracked pituitary hormones weren’t readily available in Ukraine.

All the while, Svetlana continued loading herself with guilt. All of Igor’s and Oleh’s cousins, aunts and uncles were halfway around the world. So was Svetlana’s mother. And without a prominent male figure in their lives, Svetlana believes she deprived her boys of an essential influence.

“There was never any operetta, any movie, any play, any museum they do not see. They know I try to make them happy childhood,” she says. “But it never replace not having father. It has not to do with material things. It is all emotional, and children need love and support to be nice, generous, loving adults.”

With her boys’ futures in mind, Svetlana decided any window of opportunity to go home had closed.

A Higher Meaning

Svetlana grew up Russian Orthodox, but never cared or thought much about religion until someone in Rochester brought her to Bethesda Baptist Church. Through the church, and also through time, Svetlana came to see divine purpose in everything.

“It took me six or seven years to understand that God brought me here not for Igor, but for me,” she says.

“I always thought that I am so strong, that I can do everything for Igor. But as Igor grow older, I begin realizing it was God’s blessing that I have this nice kid. He’s such a great person, such kind, loving person. He has this deep understanding of the difficulties of life many people never do. There are times I try not to show how troubled or upset I am. But I learned Igor came to me as person who could know what I am feeling without me ever saying.”

Her experiences with Igor have pulled her into nursing. She plans finishing school next spring, at Rochester Community and Technical College, and then to work as a registered nurse at the Mayo Clinic’s St. Mary’s Hospital. She told Dr. Zimmerman that, ultimately, she wants to work for him.

Zimmerman won’t speculate on the potential length or quality of Igor’s life from a medical perspective. It’s impractical to judge him against other “great giants,” as Zimmerman calls them, because Igor has benefited from advanced surgery and aftercare.

Igor’s social future is just as unsettled. Igor can’t always articulate his loneliness and frustration. He’s uncomfortable at the mention of girls and a love life. Igor foresees living with his mom at least through two years of community college. Beyond that, like many 16-year-olds, he doesn’t know or think much about paths into adulthood.

Svetlana can’t help but wonder: Will Igor ever find a way to fit into a world that isn’t built for him?

“Igor is not ready yet, not only for separate life, but he will be hurt many times, and that is my biggest fear for Igor,” she says. “Even if people don’t mean to hurt him, world can be cruel. If not cruel, then indifferent, and Igor is too sensitive. He already feels life is not fair and that God does not care for him.

“I still think there is reason for Igor to be born. If not, why all this happen? I don’t see any sense in this life, and I want to see sense. I cannot see and Igor cannot see now what is God’s plan. But I tell Igor, `To succeed in life, you don’t have to be like everybody else. You just have to be happy.’ ”

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