Date: Wednesday, June 14, 1995
Source: By Ilaina Jonas, Tribune Staff Writer.
Section: CHICAGOLAND
Copyright CHICAGO TRIBUNE

NOW, 12 KIDS KNOW THEY ARE NOT ALONE

Willie Robertson, 7, put a paper party horn to his mouth and struggled to push his breath through it. The party favor made no noise. It didn't unroll. He tried again, this time making a more conscious effort to force air around a valve that allows him to breathe through a hole in his neck. He pushed the air up his throat, out his mouth and into the horn. The yellow toy unfolded and found the face of his intended target.

Such were the antics taking place at a party for children Tuesday at Michael Reese Hospital and Medical Center. But this was no birthday party or end of school bash. None of the 12 youngsters at the party could purse their lips to blow out candles. Some don't speak. For various medical reasons, each of the guests at the hospital's first-ever "Trach 'N Treat" party have grown up breathing through a small hole in his or her neck, the result of a tracheostomy.
The operation is required when the airway above the voice box is blocked or too narrow to allow for normal breathing.

"Most of these kids don't know that there's anyone (else) like them," said Ben Gruber, chairman of the hospital's department of otolaryngology.

"Many parents feel their child is the only one in the world like this. We had to get the parents and children involved with each other."

So while the children ate ice cream and cake, poked and pulled at each other and marveled at a clown, their parent showed them off and got to know one another. Most of the youngsters, whose ages ranged from 1 to 7, needed a tracheostomy because of their premature births. Because their lungs had not developed by birth, many of the children spent weeks with tubes down their throats breathing through a ventilator. Although the equipment kept them alive, it also left the airway near their voice box blocked by scar tissue. A tracheostomy was necessary to allow an alternative passage into the lungs.

When Avonde Witherspoon Rowland was born, he weighed just 1 pound, 15 ounces. Now at age 1, he weighs 11 pounds more and can say a few words. His mother, Curtrina Witherspoon had not had contact with other kids like her son.

"I thought there were very few (like him)," she said. "Not this many." But right next to Avonde, with light brown eyes and a lace headband, was Ashley Reid Hart, now 14 pounds 20 ounces and the same age. She weighed only 1 pound 4 ounces at birth. The socialization and support from others is crucial, said Howard Kotler, Gruber's partner.

"Voice identity is something very strong in child development," Kotler said. So is the need for children to see others like themselves so they do not feel like they stand out, he added.
Fewer tracheostomies are being required for children because new drugs allow air sacs in premature babies to develop more quickly, requiring less time on ventilators, Gruber said.
But not every child at the party had the operation because they were born premature. Willie was a full-term baby who suffers from sleep apnea, a condition in which his upper airways collapse during sleep and prevent his breathing. Now in 1st grade, he has taken to buttoning up his collar and hiding his breathing hole. Yet he has learned to speak as normally as his classmates at Christopher Elementary School in Chicago.


PHOTO: Three-year-old Taylor Sheperd dances up a storm Tuesday at Michael Reese Hospital and Medical Center's party for children who have undergone tracheostomies. Tribune photo by Ovie Carter.

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