NEW YORK—The children skip noisily through the museum, rambunctious as any normal 9-year-olds on a field trip from school. Suddenly they stop in their tracks, startled by a sight so strange they have no idea how to respond.
Strapped into wheelchairs, breathing tubes snaking from holes in their throats, feeding tubes plugged into their stomachs, a procession of very different children is wheeled past the exhibits. Their heads loll, their mouths drool, their limbs are twisted and stiff. Most cannot see or speak or move. They cannot even breathe without help.
Tentatively, the school children approach.
"What's his name?" one asks shyly, staring at the splints that bind one child's hands and feet, wincing at the gurgling sounds coming from the tube in his neck.
"What happened to him?" asks another.
His name is David, says the kind lady in the white coat who wipes his mouth and strokes his head. David is 6, she tells them. He's very sick, and he can't speak, but he likes to go to museums -- just like you.
"How do you know what he likes if he can't tell you?"
It is a question caregivers are asked all the time. How do they know if any of the extraordinary efforts they pour into these profoundly brain-damaged children make a difference? The trips to the museums, the Halloween parties with costumes, the formal sit-down Thanksgiving dinners for children who cannot eat?
"Where does David live?"
He lives a few blocks away, in a world few people ever see -- two cheerfully decorated wards inside a soaring, Spanish-style brick building overlooking Central Park, a place called the Specialty Hospital.
Here in the Terence Cardinal Cooke Health Care Center, 50 of the sickest, most vulnerable young people live out their lives.
Their stories are tragic: babies born prematurely to drug-addicted mothers, a boy who nearly drowned in the bathtub as an infant, infants doomed from birth by genetic abnormalities with strange-sounding names and grim consequences.
To visitors, Specialty can appear a deeply disturbing place, one that hums with intimidating machines and ever-present reminders of the fragility of life. Inevitably, it is also a place that raises stark and troubling questions about costs of care and quality of life and even what it means to be human.
But for those who live and work here, Specialty represents all the joy and happiness and nurturing safety of home. For although this is a world haunted by disease and suffering, skepticism and death, it is also a world filled with compassion and care.
Most of all, it is a world filled with love.
It's 9:30 on a crisp fall morning and the third floor is buzzing with activity. The children have been dressed and cleaned and moved from their bedrooms to "classrooms" -- larger rooms decorated with huge cartoon murals, but also lined with beds and tubes and machines.
Aides in scrubs flit from bed to bed, filling feeding bags with formula, administering medicines through stomach tubes and checking a myriad of blinking machines. They ignore the constant beeping and hissing, laughing and joking and singing as they work.
"Crystal, you look so pretty today." "Jonathan, why are you coughing?" "Marquis, are you ready for some fresh air?"
Some patients sit listlessly in wheelchairs in front of a television. Others lie motionless in beds, eyes staring vacantly at the ceiling, the rhythmic pumping of the long blue tubes attached to their throats a constant reminder of the technology that keeps them alive.
There is Willie Ruiz, once a freckle-faced baseball loving Brooklyn kid who suffered an asthma attack at the age of 14. Seventeen years later, it is impossible not to wonder -- does the man with the vapid stare remember anything of the impish child? Does he miss his late mother, who died of cancer last year and whose picture is pinned above his bed?
When a tear rolls down his cheek at the mention of his childhood, is it coincidence, or a sadness he has no other way of expressing? Doctors and neurologists have no way of knowing.
And 8-year-old Desean Willams, nicknamed "the little professor" for his oversized goggle glasses and his lopsided inquisitive grin. Born with Goldenhar Syndrome, which affects facial development, Desean was so tiny and sick and deformed as an infant no one expected him to survive.
In one corner a little girl sits motionless, like a doll in her pretty pink dress, her huge lashed eyes blinking unknowingly at a world she cannot see. Her legs are bound in braces decorated with butterflies. Propped by her bed are the shiny new silver sneakers she will never use.
Does she hear people tell her how pretty she is? Does she even know her name?
The floors of Specialty are filled with such questions.
Some of the children are wards of the state. Others receive occasional visits from families, usually at the holidays. A few parents are actively involved, spending hours with their children every week.
Mostly, though, the staff is their family, and they treat "our kids" as though they are the most precious human beings in the world.
They shower them with hugs and kisses as they patiently unclog tracheotomy tubes and replace oxygen tanks and suction the throat of a child who is choking. They throw big birthday parties with presents and cards and cake. They rub rosemary and thyme between twisted fingers at "horticultural class" and help those same fingers "paint" on construction paper.
They read to them and sing to them and confide in them. They organize trips to the zoo, the Museum of Natural History, the Museum of Modern Art. They know that 16-year-year old Kerri, born severely prematurely, cannot see Warhol's iconic
But they also know that whenever they take the children out of the hospital setting, they respond, in small and subtle ways -- the trace of a smile, a blink, a frown.
Even friends and family find it difficult to grasp: Why not use your talents and skills, they ask, for people who might improve?
If only they understood the rewards.
"These children," says recreational therapist Toiyeuco Wiles, "teach us to appreciate what it is to be human."
In her nine years at Specialty, they have taught Wiles levels of compassion and patience she never felt before. And they have taught her to cherish little things, "like a cup of coffee, or snow, or the feeling of rain. Some of these kids have never felt that."
When are you going to have children of your own, her mother prods her 32-year-old daughter.
Mom, Wiles replies, I have 50.
It is a constant refrain from staff at every level: how attached they become, the love they feel, the deep sense that these children give as much love and joy as they receive. For many, it takes time to feel so sure. When they first start at Specialty, caregivers often feel scared by the fragility of their charges, troubled by doubts about whether they are contributing to life, or to a cruel imitation.
And yet few leave. Nurses and aides and therapists work here for decades, growing sure of their role and their belief that everyone has a unique way of contributing to this world.
"These kids grab a hold of your heart," says Hattie Turnbull, a 77-year-old retired nurse's aide, who volunteers as a "foster grandma," reading to the children, holding them, combing their hair. "They teach you what is real."
There are no medical miracles at Speciality, no wondrous stories of patients stepping out of their wheelchairs or suddenly talking after years of silence. The children of Specialty will deteriorate and die here. The real wonder is that they have survived.
The hospital is run by the Roman Catholic Archdiocese of New York, and papal photographs, crucifixes and statues of the infant of Prague adorn the nurses stations along with photographs of children who have died.
But staff and patients come from all cultures and religious beliefs. Many of the caregivers are African and Asian immigrants who know such children would never have survived in their native countries.
There was a time, not long ago, when they were rarely seen in this country.
There are still many at Speciality who remember the horrors of the Willowbrook State School on Staten Island, an institution for mentally retarded children that was shut down 30 years ago after media investigations exposed appalling conditions. Reports of children locked away in filthy rooms with little medical attention, bound in restraints and abused by staff, caused a public outcry and led to laws protecting the civil rights of the institutionalized.
Transferred to Terence Cardinal Cooke (then called Flower Hospital), Willowbrook's residents became the first patients of the new Specialty Hospital for Children.
In the early years, when patients were slightly higher functioning, there were some who got well enough to be discharged. But the past decade has seen a push to de-institutionalize even the most chronically ill. Now only the sickest end up in places like Specialty, where beds are highly coveted not just because of the level of care but because patients can remain through adulthood. Most children's hospitals require patients to leave when they turn 18. With few options available, they wind up in adult nursing homes.
Specialty is different too, in the breadth of its programs, from recreational activities to medical visits to school.
In a small, yellow "classroom" on one recent afternoon, special education teacher Elliot Seitzman towered over the wheelchairs of two unresponsive teenage boys. A large man with a kindly face, he breezily informed his students that they were going to study the letter F, for fall. Eyes closed, tracheotomy tubes wheezing, the teens show not a flicker of recognition as he placed leaves and acorns into their limp hands.
Seitzman knows how strange the scene appears, but the state mandates that even severely mentally retarded children have a supervised educational program.
Again, the questions: What can he possibly hope to teach these boys? What can these lessons accomplish?
"There is something that is reachable inside everyone," says occupational therapist Esperanza Minaya, as she massages the rigid limbs of a child whose body is shaking with tremors. "We just have to unlock it."
Minaya, 45, is loud and bubbly and her infectious good nature fills the room. But the child she calls "my African princess" only seems to tighten her body even more.
Minaya sighs and moves on to her next patient, Christina Manigault, a heavy 23-year-old being kept alive by a ventilator. "Hi Christy, it's me, Espy!" Minaya cries as she climbs onto the bed and heaves the young woman's unresponsive body to one side, pushing the ventilator tube out of the way, lifting her into a sitting position.
Minaya feels a special affinity for Christina, who is the same age as her own daughter and with whom she has worked for 20 years. "I just love this girl," she says, planting a huge kiss on her forehead. Christina opens her eyes groggily. Slowly she breaks into a smile. It lasts just a moment, then she closes her eyes and flops back down.
In a nearby room, five children are being bundled up for a walk in Central Park. Just getting them ready requires an enormous effort as aides unhook their tubes and hoist them in a sling-like device onto their wheelchairs. Eventually they are wheeled outside into the din of the city, where even cab drivers gawk in astonishment at the motley band of patients and caregivers, tubes and oxygen tanks crossing Fifth Avenue. Inside the park, the children settle by the lily pond, oblivious to the volunteers raking leaves, tourists snapping photos or the elderly couple who pointedly stare.
Birds splash in the fountain, taxis honk in the distance, but it is impossible to tell if the children have any idea where they are.
"Just because they are nonverbal, doesn't mean they don't have their own way of expressing themselves," says recreational therapist Sergio Dias, a cheerful, muscular 40-year-old, who organized the outing and who is convinced that the fresh air, the change of scene, even the rustle of leaves tap something deep inside.
It is not a belief everyone shares. There are some who dispute the cost and efforts of keeping such children alive. Specialty estimates it costs $1,000 a day per child, most of it paid for by the state Medicaid program.
And there are ethical and philosophical dilemmas: Are these patients better off, hooked up to their machines, locked in their impenetrable worlds, totally dependent on people and a community they can never know or fully understand? Alive because of the success of medical science, are they martyrs to that success?
What is the quality of life of the 25-year-old woman contorted by scoliosis, swollen with medication, who shows no reaction, not even on her birthday when staff present her with a strawberry cake -- not a crumb will pass her lips -- and gather around her bed for a hearty rendition of "Happy Birthday."
Even Stephen Schuh, Specialty's 62-year-old administrator, who has spent his career working with chronically ill patients, confesses to seeing cases where he has wondered if doctors were doing the right thing as they struggled to save a severely brain-damaged infant. Such questions have only become more complex as sophisticated medicines and technologies prolong the lives of children who once would not have survived.
And then there is the raw reality of cost. Schuh worries all the time about budget cuts and how they will affect programs and staff, and especially the quality of life of patients. Terence Cardinal Cooke also cares for patients with Huntington's Disease and AIDS and Schuh is a member of the hospital's ethics committee that reviews ethical and moral issues concerning end-of-life care.
But adults often have living wills, or family members who are willing to make a decision to remove a loved one from life support. Schuh can't recall a case involving a child coming before the committee.
And, Schuh asks rhetorically, could you remove the feeding tube of any of our kids?
Every year, at Thanksgiving, Specialty's staff hosts a formal dinner for patients and families. A band plays and siblings frolic around wheelchairs, posing for photos with the brother or sister who never comes home.
The scene is festive -- and bittersweet. For despite all the love and care and comfort of Specialty, there is an enduring anguish for parents who must leave a child behind.
"This is a wonderful place," says Nalini Gocool, who visits her 8-year-old son, Christopher several times a week, to bathe him and do his laundry. "But I wish he could come home."
Christopher, who was discovered face down and unresponsive in his hospital crib shortly after he was born, has never been home. At first Gocool was terrified of the tubes and machines, afraid to touch her helpless, drooling son. Now, the 41-year-old mother finds bath time a soothing, almost spiritual escape. As she soaps his head, cleans out the hole in his neck, and changes the dressing around the feeding tube in his stomach, she talks to him, confiding her worries and frustrations and dreams.
She tells him when she has a fight with husband, when her 3-year-old daughter, Alanna, misbehaves. She tells him she will be with him to the end.
Gocool is adored in Specialty. Her sunny smile lights up the wards and her love for Christopher is a joy to behold. But she is unusual. Many of the children have the words "no family visits" stamped on their charts.
"We don't judge," says social worker Shyla Solomon, a friendly, soft-spoken woman who acts as the main liaison between families and caregivers. "We encourage parents to be as involved as possible, but we cannot put ourselves in their shoes."
Solomon's tiny basement office is crammed with photographs of children who have died, their smiling faces gazing out from funeral cards. Her files are filled with heartbreak.
She tells of parents who cannot accept their sick child, sometimes out of guilt or cultural stigmas. Others disappear for years and cannot be contacted even when their child needs critical surgery. One 8-year-old girl recently languished for weeks; her feeding tube was leaking internally, doctors could fix it with surgery, but her mother could not be located to sign the consent.
Solomon has accompanied parents to the medical examiner's office to identify the body of a child they haven't seen in years. And she has arranged funerals, as she did earlier this year for Andrew, a 15-year-old child who was born with microcephaly and other abnormalities.
Abandoned at birth, Specialty was the only home Andrew ever knew. Solomon organized his service in the little chapel with the stained glass windows on the hospital's first floor.
In the lobby she posted notices announcing that "another one of Specialty's angels has passed."
"They are all angels here," says Nasreen Aziz, a 44-year-old immigrant from Pakistan who travels to Mecca once a year to pray for her daughter, Mehwish, and the other patients. "They are all gifts -- and tests -- from the Lord."
Mehwish, who was born with the umbilical cord around her neck, inherited her mother's dark eyes and silky black hair. Now 24, she smiles as her mother strokes it, peaceful in her presence.
But she cannot tell her mother how joyful she appeared earlier in the week during a visit to the Guggenheim, how she seemed to light up before the huge Kandinsky canvases, beaming with excitement and pleasure. Even Wiles, who led the outing, marveled at her response. Was Mehwish reacting to the paintings, the vivid splashes of color, or was it the crowds? Does she possess some hidden artistic talent that might be tapped if only doctors knew how?
As always at Specialty, the questions have no answers. There is only faith, and love.
Mehwish visits her mother in dreams. She tells her, "Mommy, even though I can't talk, I can understand things."
Gazing at her daughter, Aziz says, "I believe she can."
Helen O'Neill is a national writer for The Associated Press, based in New York. She can be contacted at features(at)ap.org.