A WORLD OF DIFFERENCE; OPERATION BRINGS BABY TO LIFE

Date: 1996-12-03

Syracuse Herald-Journal (NY)
Author: Amber Smith Staff writer

When his patient awoke from surgery Nov. 6, Dr. Jeffrey Winfield knew he'd made a world of difference.

"All of a sudden, Henry became Henry, and the child was interacting and playful and holding toys and holding a bottle," said Winfield, a Syracuse neurosurgeon.

Henry had a straightforward medical problem - fluid on the brain - which Winfield has corrected in 400 other infants. They all lived within easy driving distance of the Syracuse health mecca and all its fancy medical gadgets and experts like Winfield.

Baby Henry Castellano's fate rested more on the cosmos.

His home is a dirt-floor shack with a leaky roof in the hills of Honduras. Surgeons there operate on poor children only if their families scrounge the necessary supplies.

Shortly after Henry was born last April, his head began growing, as if someone were inflating a balloon in his brain. By the time he reached Syracuse, the 8-month-old had a head the size of an 18-year-old.

He's alive and recovering today, thanks to a woman in Honduras who joined the Peace Corps at 55, a Rochester couple devoted to raising children with disabilities and Winfield, who said "sure" when they asked him to operate on Henry for free.

"This is all out of the goodness of everybody's heart," said Sharon Every of Rochester. The surgeon, the hospital, the nurses, the airline, her, the woman in Honduras. It wouldn't have happened without every piece in place.

Dolores Williams, 68, went to Santa Barbara, Honduras four years ago.

"I thought that maybe I'd just vacation for a couple of weeks."

Now she runs an organization that helps get medical care for poor Honduran children.

Williams joined the Peace Corps at age 55. Her children were grown. Her husband had died. She decided it was her turn. She was sent to Copan, in the mountains near the Guatemalan border. There was no electricity, no water, no outhouses.

Ten years later, Williams returned to Honduras, this time for vacation. She met some people who were trying to get an organization off the ground to help poor, sick children.

Today, the organization is run out of Williams' home, made of adobe with a tin roof. Cock-a-doodle-do's punctuate her day. Her neighbors raise fighting cocks.

Williams has received free airline tickets to the United States for more than 50 babies for various treatments, arranged their visas and coordinated their stays with one of a dozen host families.

She is also a liaison to other groups. The Lions Club is sending optometrists to Honduras this month to provide free vision care.

"This program runs on my Social Security, which is $570 a month," Williams said. Friends also make contributions of money or supplies and clothing. "It's growing so big that I'm hoping God will send me some volunteers, bilingual preferably, and who know how to use a computer."

Henry's mother, Rosa Castellano, brought him to Williams when he was 6 weeks old. He flailed and cried all the time. With two older boys to care for, Castellano didn't know what to do.

"She loves him dearly," Williams said. "It's just that she's so poor. You cannot imagine."

Williams took Henry in. She got him a visit at the hospital, where surgeons told her he was suffering from hydrocephalus. He needed a shunt, a special catheter to continually drain the fluid from his brain. The shunt would cost about $500.

Williams put the word out through her network of families in the United States. A friend of a friend of a friend knew a doctor who would donate a shunt for Henry.

When it arrived in Honduras a couple weeks later, the surgeon operated on Henry.

For two months, Henry seemed to get better. Then he went back to flailing and crying. The Honduran surgeon recognized something was wrong but said it was beyond his ability to fix. Henry needed a neurosurgeon in America.

That's when Williams turned to Every, in Rochester.

Her family includes 14 children with special needs. They get help from their son and daughter who live at home, two other daughters who live nearby and a sister who lives down the street.

Every and her husband, William decided 19 years ago to be foster parents to a girl with hydrocephalus. They were quite attached when, after five years, the girl was returned to her birth mother. Friends pointed out how many children with special needs need permanent homes, and the Everys started adopting.

Today, nine adopted children live with them, along with two children for whom they are legal guardians and three, including Henry, who they are temporarily housing from Honduras. The children range from having mild deficits to needing around-the-clock care.

After Every got the call from Williams, she started calling friends. A woman in Pennsylvania knew of Winfield's reputation for treating hydrocephalic children. Every called him. Winfield agreed to do the work for free and convinced Crouse Hospital to let the baby stay there for free.

Williams flew on Continental Airlines with Henry from Honduras to Texas to New Jersey, stayed over a night there and flew into Syracuse Nov. 3. Every met her at the airport and drove Henry to Crouse.

Winfield had a computerized scan of Henry's head taken. It revealed sacs in his brain were bulging with water. That told him the shunt placed by the surgeon in Honduras wasn't working. The baby was irritable, and his white blood cell count was high. Winfield drew a sample of the fluid and gazed under a microscope. He found bacteria. The baby had a slow-growing infection.

Forty-eight hours later, intravenous antibiotics had overtaken the infection, and Henry was ready for surgery.

The procedure lasted about an hour Nov. 6.

Winfield cut into Henry's skull, about 1 1/2 inches behind his ear. He placed a catheter into the baby's brain, tapping the sacs that contained the excess fluid. Then he placed the tubing just beneath Henry's skin, behind his ear, along his neck and down into the left side of his abdomen above his bellybutton. There, the fluid is absorbed by his intestines and excreted with the rest of his body wastes. Winfield left loops of extra tubing that will uncoil as Henry grows. The shunt will remain with him.

Shortly after surgery, Henry started behaving as a normal 8-month-old - and captured many a nurse's heart.

"He was interactive. He was cooing, smiling, doing everything he was supposed to do. It just touched your heart," said Andy Butchko, a Crouse nurse who took care of Henry.

Henry was swamped with affection. Nurses brought him little gifts, and spent as much extra time with him as possible. Unlike the other patients, he had no parent hovering over his crib.

Butchko and his wife, Carrie Zahler of Syracuse fell in love with Henry. Unsure of his home situation, they offered to adopt him.

"We just didn't want him to go back and not have anybody," Butchko explained.

He was glad to hear Henry has a mother who is anxious for his return. "Every child should be with his mother," he said.

Henry was discharged Thursday and is recovering with Every in Rochester. He'll return to Syracuse in a week or two so Winfield can check his progress.

Winfield expects Henry to make a good recovery but said the boy will probably have lingering cognitive deficits. His head is still oversized. He'll have to grow into it.

"Is Henry going to be normal and go to college? Probably not," Winfield said.

Every is optimistic.

"I really think he has a lot of potential," she said. "His head is what's going to hold him back, and I don't mean mentally. I mean physically."

She believes physical therapy, begun now, could be helpful. So, Henry may remain with her for months. His visa expires in November 1997. By then, he'll return to his world in Honduras.

Caption:
SHARON EVERY feeds Henry Costellano in her home in West Henrietta. Costellano, 8 months old, is living with the Everys while he receives medical treatment in Syracuse.

THE EVERY FAMILY includes 14 children with special needs. It includes nine adopted children, two for whom the Everys are legal guardians and three from Honduras, including Henry Costellano, who are living there temporarily while they receive medical care. In front from left are:
Katelynn, 11;Tiffany, 8; Kimberly, 3 (the Everys' granddaughter); and David, 9. In back from left are: Elizabeth, 13, holding Quidlian, 7 months, from Honduras; Megan, 13; Sharon, holding Henry, 8 months, from Honduras, and Jesse, 5; Jeffrey, 12, holding Josue, 2, of Honduras; Susan, 13; and Devin, 6.

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