Skipping noisily through the museum, rambunctious as any normal 9-year-olds, the children suddenly stop in their tracks. Before them is 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 his neck.
“What happened to him?” asks another.
His name is David, says the 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’s a good question. How do caregivers 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, 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.
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 troubling questions about costs of care and quality of life.
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 and death, it is also a world filled with compassion and care.
Most of all, it is a world filled with love.
On a crisp fall morning the third floor is buzzing with activity. 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.
Some patients sit listlessly in wheelchairs. 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 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?
Doctors and neurologists have no way to know.
And 8-year-old Desean Williams, nicknamed “the little professor” for his oversized goggle glasses and his lopsided grin. Born so tiny and sick and deformed, no one expected him to survive.
In one corner a little girl sits motionless, 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 new silver sneakers she will never use.
Does she hear people tell her how pretty she is? Does she even know her name?
Specialty is filled with such questions.
Some children are wards of the state. Others receive occasional visits from families and a few parents are actively involved. Mostly, though, the staff is 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. They throw big birthday parties with presents and cake. They rub rosemary and thyme between twisted fingers at “horticultural class” and help “paint” in art class.
They organize trips to museums and the zoo, knowing that whenever they take the children into the community, 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?
“These children,” says recreational therapist Toiyeuco Wiles, “teach us to appreciate what it is to be human.”
It is a constant refrain from staff at every level, the love they feel, the deep sense that these children give as much love and joy as they receive.
“These kids grab a hold of your heart,” says Hattie Turnbull, 77, who volunteers as a “foster grandma,” reading to the children, combing their hair. “They teach you what is real.”
There are no medical miracles at Specialty, no wondrous stories of patients stepping out of wheelchairs or suddenly talking after years of silence. The real wonder is that they have survived.
The hospital is run by the Roman Catholic Archdiocese of New York, but staff and patients come from all cultures and religions. 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 Specialty who remember the horrors of the Willowbrook State School on Staten Island, an institution for mentally retarded children that was shut down 32 years ago after media investigations exposed appalling conditions. Reports of children locked away in filthy rooms, bound in restraints and abused by staff, led to laws protecting the civil rights of the institutionalized.
Willowbrook’s residents became the first patients of the new Specialty Hospital for Children.
In the early years, when patients were slightly higher functioning, some got well enough to be discharged. But the past decade has seen a push to de-institutionalize even the 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 at 18.
Specialty is different too, in the breadth of its programs, from recreational activities to medical visits to school. The state mandates that even severely mentally retarded children have a supervised educational program.
And so, in a small yellow “classroom” on one recent afternoon, special education teacher Elliot Seitzman towered over the wheelchairs of two teenagers, announcing that they would study the letter F, for fall. Eyes closed, tracheotomy tubes wheezing, the boys show not a flicker of recognition as he placed leaves and acorns into their limp hands.
What can he possibly hope to teach? What can these lessons accomplish?
“There is something that is reachable inside everyone,” says occupational therapist Esperanza Minaya, as she massages the limbs of Christina Manigault, a heavy 23-year-old being kept alive by a ventilator.
Minaya, 45, feels a special affinity for Christina, who is the same age as her own daughter. “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.
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 hoist them in a sling-like device onto their wheelchairs. Eventually they are wheeled outside, where even cab drivers gawk in astonishment at the motley band of patients and caregivers, tubes and oxygen tanks crossing Fifth Avenue.
“Just because they are nonverbal, doesn’t mean they don’t have their own way of expressing themselves,” says recreational therapist Sergio Dias who organized the outing and who is convinced that the fresh air, 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, dependent on people and a community they can never know or fully understand?
Even Specialty’s administrator Stephen Schuh confesses to seeing cases where he wondered if doctors were doing the right thing as they struggled to save a severely brain-damaged infant.
And there is the cost. Schuh worries all the time about budget cuts and how they will affect programs and staff. 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.
Says Schuh 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 of Specialty, there is an enduring anguish for parents who must leave a child behind.
“This is a wonderful place,” says Nalini Gocool, whose 8-year-old son, Christopher, was discovered face down and unresponsive in his hospital crib shortly after he was born. “But I wish he could come home.”
Gocool visits several times a week to bathe Christopher and do his laundry. But she is unusual.
Many of the children never have a visitor.
“We don’t judge,” says social worker Shyla Solomon, the main liaison between families and caregivers. “We encourage parents to be as involved as possible, but we cannot put ourselves in their shoes.”
She tells of parents who cannot accept their sick child, sometimes out of guilt or cultural stigmas. Others cannot be contacted even when their child needs critical surgery.
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 a 15-year-old child who was abandoned at birth.
Before the service, she posted notices announcing, “another one of Specialty’s angels has passed.”
“They are all angels here,” says Nasreen Aziz, a 44-year-old immigrant from Pakistan, whose daughter, Mehwish, was born with the umbilical cord around her neck. “They are all gifts — and tests — from the Lord.”
Mehwish, now 24, inherited her mother’s dark eyes and silky black hair. She smiles as her mother strokes it.
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. Was she reacting to the paintings, the vivid splashes of color, or 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.”
Says Aziz, “I believe she can.”