• Newsday: In the News

    Angela Frances Policastro, all 8 pounds, 9 ounces of her, slipped silently into the world on a Wednesday afternoon 13 summers ago. “She was blue, very blue,” said her father, who was watching his daughter’s delivery.

    The mother was awake in the delivery room at Good Samaritan Hospital in West Islip. “I was thinking, of course, that I had the perfect baby,” Angie Policastro said the other day at home in Hauppauge. “I ate perfectly during my pregnancy. I wouldn’t even eat cream cheese because it has preservatives in it. Then Angela was born.”

    And the delivery room fell silent.

    “Nobody said to me, ‘It’s a boy’ or ‘It’s a girl,'” the mother said, “and Angela never made a sound.”

    Bloody and blue, the baby was whisked away to a nearby table.

    “All of a sudden, there’s a room full of people working on her,” said Angela’s father, Bob Policastro, his voice barely above a whisper. “I’m seeing something that’s surreal. One doctor was pinching her chest, and I understood: He’s showing that there’s no reaction.”

    Angela had stopped breathing. Her heart and kidneys had shut down. Her lungs had filled with fluid. She had lost a lot of blood, which prevented oxygen from bathing her brain. Doctors and nurses brought Angela back to life, but just her brain stem was keeping her going.

    “She was the most beautiful baby you’ve ever seen, but she’s brain dead, basically,” Angie Policastro said, her eyes filling with tears. “One day in your life you go from the highest high that a mother could ever be on, to the lowest low. All the dreams you had for your child are gone. She was blind and deaf because of the brain damage, but we loved her to death.”

    Angela died on an autumn Monday morning in 1990. She had lived for 404 days, most of them in a Connecticut hospital – a 2½-hour drive away. There was no permanent place in Nassau or Suffolk counties equipped to handle the complex technological needs of medically frail children.

    “Long Island had no place for Angela,” said Bob Policastro, now 42. “It’s heartbreaking to have to drive for hours just to hold the hand of your sick child. It’s an injustice that needed to be addressed. I took it on as a torch.”

    Policastro’s personal pain spurred him to make thousands of phone calls and go to hundreds of meetings, trying to get the public, politicians and bureaucrats to recognize the gap in the state’s health-care system for chronically ill, brain-damaged children in the New York metropolitan area.

    Ten years after Angela died, her father got what he had worked for: With $500,000 approved in the state budget, a small group home opened in East Moriches for seven severely disabled children who require constant care. The five-bedroom home on Montauk Highway – the only one of its kind on Long Island – celebrates its second birthday this month.

    It’s called Angela’s House.

    Inside the yellow house with maroon shutters live two girls and five boys, seven little survivors called the Angeluca-chooka Tribe. In an earlier, less medically advanced age, most of these children might not be alive. They can’t talk. They can’t walk. They can’t sustain eye contact or show for certain that they know the faces of their mothers and fathers. They’re all in diapers.

    The children came to Angela’s House from Franklin Square and Sayville, East Meadow and Mattituck, Islip Terrace, Bohemia and Commack. They range in age from 6 to 12. The smallest child weighs 29 pounds, the heaviest weighs 88.

    The chubbiest is 9-year-old Johnny Boutin. He was born with the umbilical cord wrapped around his neck like noose, cutting off blood to his brain, his mother said. He has cerebral palsy, seizures, congestive heart failure and his lungs fill with fluid. He breathes through a tracheal tube in his neck and is fed through another tube into his stomach. The 12-woman staff at Angela’s House calls Johnny “Buddha Boy” because of his girth and a smile that could make Scrooge laugh out loud.

    “Johnny’s a perpetual infant,” said his mother, Lorraine Boutin, 36, stroking her son’s face. “They say he’ll never progress mentally past the age of 3 to 6 months, but he knows things that doctors say he should never know. He knows it’s me when I come here. He knows my touch. He knows my warm breath in his ear. A mom knows things like that.”

    To be the parent of such a medically fragile child is a hard bargain, a painful blend of parental love, profound duty, self-preservation and the never-ending nature of grief. Bob Policastro points to estimates that 10 to 15 percent of children have chronic medical conditions – from asthma, AIDS and diabetes to rare genetic disorders and syndromes.

    Although there are no official statistics for more serious conditions, Bob Policastro estimates that as many as 600 Long Island children are severely brain-damaged, being cared for at home or in hospitals upstate or out of state.

    “Unless you have a handicapped child or know someone who has one, people don’t know how many kids like Johnny are out there,” Lorraine Boutin said. “It’s an invisible population, almost a secret society.”

    The secret society should be celebrated, not hidden, Angie and Bob Policastro believe. They say the house named for their daughter, with its small, homelike setting and hands-on care, should be the rule, not the exception.

    “Angela was just a bundle of love,” said her mother, now 42. “She was everything that’s peaceful and beautiful, and that’s what this place is.”

    At Angela’s House, Lorraine Boutin pushed her son Johnny in his wheelchair down the hall, past a portrait of Angela Policastro in a pink dress. “Out of Bob’s and Angie’s tragedy, their misery, seven families are ecstatic,” Boutin said. “It’s amazing that Bob fought so long and so hard for this house, but I’m happy he did. This is some good place.”

    The place is a splash of color. Murals cover the walls in the bedrooms – rainbows and waterfalls, dolphins and whales. They help camouflage the oxygen outlets, ventilators, suction units and other equipment the children need to survive. Foot-long cloth butterflies flutter from the skylights in the den – yellow and green, red and blue. Silver and gold fish swim in an aquarium.

    It’s not all butterflies and rainbows. Children with almost no cognitive function are connected to tubes and stare off into their own world. Thomas McGrath, 6, has cerebral palsy, is legally blind, has trouble breathing and weighs 29 pounds. Madison Ludlow, also 6, has a defective heart valve, is severely retarded and weighs 30 pounds.

    The place is stuffed animals galore. A six-foot-long green alligator grins in the den, joined by lions, tigers and bears, cats and caterpillars. Madison goes to bed at night hugging a purple Barney that’s about as big as she is. Thomas sleeps with Goofy.

    It’s not all cats and caterpillars. Pedrom Palazzo, 10, whom they all call “Pedgie,” has seizures and severe lung problems. Kelly O’Connell has cerebral palsy and seizures and is legally blind. She’s 12 and weighs 40 pounds.

    The place perks with music. Big Bird sings on TV. Johnny Boutin’s belly bounces to the music from the movie “Shrek.” Thomas listens to Mozart in his room. Kelly claps her hands to the Rolling Stones and the Beatles. On “band night” once a week, the care counselors and nurses guide the hands of the children so they can ring bells, bang cymbals, play keyboards, shake tambourines and beat drums.

    It’s not all Big Bird and Mozart. Thomas, the most vocally indignant, shouts loudly. Madison sobs when she’s tired or has physical therapy to strengthen her legs. Kelly yells and flails her arms when she’s awakened in the morning. Kids cry out in the night, and a nurse’s arms and soft voice are right there.

    The place is perfumed with the smell of sweet potatoes and marshmallows baking in the kitchen. Pork chops and string beans simmer on the stove.

    A Little Girl’s Legacy
    -Donald P. Myers