Bringing Up Bruno
How a boy with severe disabilities beat the odds.
Hardly anything bothers 17-year-old Bruno Taylor these days, except for the fact that he’s 4’11.” But he is so perfectly proportioned that, standing in the distance, dipping his toe into Lake Michigan, he looks like a tanned, blond Adonis. Everyone seems to adore him, and he loves the world back. For a child who was not expected to live past infancy, he is a miracle. “Most kids born like this end up in institutions,” Bruno’s physician warned the Taylors. Not our child, they vowed.
It was a tough challenge. Bruno couldn’t swallow. When his parents tried to feed him anything, he spit it up immediately. After a few days he became listless – clearly not thriving. His parents, Larry and Ann Taylor, both professors at the University of Wisconsin, brought him back to the university’s prestigious medical center. It was there that a CAT scan revealed the news that Bruno had been born with only part of his cerebellum, the central processing unit of the brain.
Bruno’s condition is so complex that there is no one name for what he has. The cerebellum is a cauliflower-shaped section of the brain located in the hindbrain, at the lower rear of the head. It is a computer, mostly dedicated to the intricacies of voluntary movement, managing walking, balance, and swallowing. Damage to the cerebellum leaves the sufferer with a drunkard’s gait (if he or she walks at all).
More bad news
Two days after his birth, Bruno’s doctors also found a seriously deformed heart valve and a hole between the chambers of his heart, which would take two surgeries to fix. And he would have to learn eventually how to eat on his own in order to gain strength and grow. For the time being, doctors inserted a nasal gastric tube to provide the nourishment he couldn’t take by mouth.
His parents struggled for months to get Bruno to eat. The only nourishment that sustained him was the liquid delivered to his stomach by a tube, and that would not be enough to help him grow normally. The Taylors persisted and fed Bruno every day by mouth. And every day he threw up. Clearly, their plan wasn’t working.
They reluctantly took him to a Wisconsin center for children with eating problem. Bruno stayed there, without his parents, for six weeks, as specialists helped him learn to eat. Their efforts were only partly successful; four months later, Bruno had surgery to place a larger feeding tube into his stomach. He required 24-hour-a-day nursing care.
Wonderful surprise
At age two, something unexpected happened: Bruno, who could not speak or eat on his own, began to walk. That year, the family had moved to Ann Arbor, Michigan, where both parents would be professors at the University of Michigan, and Bruno started preschool. An aide came to the school every day to feed him lunch, but he continued receiving nourishment through the tube for breakfast and dinner. About this time Bruno required surgery and his feeding tube was removed. Though he could not feed himself, others could feed him. He became more adept at language.
The big breakthrough came while the family lived in Palo Alto, California. Larry sensed that Bruno was more capable than his low reading scores indicated. Specialists assured the family that them that Bruno would just start reading one day. But Larry had the idea of teaching Bruno as if he were blind. Bruno’s world changed with persistent and patient help at his school’s learning room for kids with both physical and learning disabilities. His participation in school grew by leaps and bounds. In this nurturing environment, Bruno spent two years in Palo Alto on the honor roll.
About that time everything changed. The school supplied Bruno with a special computer that read his books to him, and also provided a quiet room where he could give answers to tests verbally and write papers by dictating them into the computer. They allowed him to use calculators and tape recorders – anything he needed to enable his learning. That year he got all As and Bs. “He’d been struggling with school for years, and with the right approach he flowered,” says Ann.
What Bruno lacked in elocution he gained in knowledge and breadth of his vocabulary. “My life is better in so many ways,” says Bruno. “My schoolwork has improved dramatically. I love eating and cooking many kinds of food. I have changed from a kid who doctors thought would not walk into a swimmer and soccer player!”
Fortunately, other kids never teased or taunted Bruno, who was still tiny for his age. “The kids at school are very protective of him,” says his mother. “And his classmates have always responded well to him.”
Without the pressure to read, Bruno became a sponge for information. When the Taylors returned to Ann Arbor, Michigan, the city’s “open school” followed through on what Bruno had accomplished in Palo Alto. Computers, aides, quiet study, and test-taking rooms are all available to him.
Bruno today
Bruno is now in the eleventh grade. He is an articulate, well-read youngster who still struggles to make his words sound right. While his performance is uneven (he is at the twelfth-grade level in some subjects but at the third-grade in others), he was on the high school honor roll for two years, and he hopes to go to Landmark College, a school specializing students with learning disabilities and ADHD. “That would be the ultimate for me,” Bruno says.
No doubt, he’ll reach his goals. Today, the boy with heart and brain problems, who couldn’t read, write, speak, or eat, is now working as a part-time chef at Ann Arbor’s trendy Jefferson Market. Bruno Taylor never met a person he didn’t like, and his warmth creates a glow around him.
“It’s like opening a door and finding a beautifully-wrapped present outside,” says Ann. “You open the present and find an exquisite jewel box inside.” And in that jewel box is a baby boy, destined for a journey few of us could have endured-always with a smile on his face that seems to say, “I can do anything.” And there’s no doubt he will.
Names have been changed.
