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Special Report

Children with HIV/AIDS

Special to the National Catholic Reporter
New York

Iman was nearly 4, but looked like a 2-year-old. Born poor and HIV-infected, his short life ended, as many do, at Incarnation Children’s Center in upper Manhattan. He had no worldly goods to leave behind, but like all the children who pass through this facility, he left something more profound.

“Each child is very special and different,” said Dominican Sr. Bridget Kiniry. “They have brought their own messages and left their own messages here.”

Remembering Iman, who died of AIDS in 1992, brings tears to Kiniry’s eyes. She had taken the fragile child out to the center’s backyard playground to enjoy the warmth of a sunny June day. The next afternoon she went to visit him in his room before going home. He was lying in his bed and reaching up with his tiny hand. Thinking he was reaching for her, she asked if he wanted to go out, but he continued extending his hand upward. Then Kiniry realized this time Iman was not reaching for her.

“All of a sudden it came to me. I said, ‘That’s Jesus, Iman. Just take his hand.’ ”

That night, Iman died.

Iman left behind the message other children have left, that God is present in their suffering.

“I think these kids are closer to God,” Kiniry said. “They are aware of God’s presence and they allow God to be God for all of us.”

Kiniry, one of the center’s cofounders, has prepared more than 100 funerals for these children; at one time they died at a rate of two or three a month. Now, with many new drugs to treat HIV and AIDS, children are living longer and Kiniry plans fewer funerals. But new problems have arisen that the center’s creators never could have foreseen. Questions like how and when to tell a child he or she has AIDS were once nonexistent; but with school-aged children, these issues are quite real. How to handle developmental problems of a child who was never expected to live, but did, also are major concerns. The staff must consider each child individually and trust the judgments will be right.

“In some cases you are praying your way through because there are no precedents,” Kiniry said.

Incarnation Children’s Center, New York’s only multi-service residence for children with HIV/AIDS, is noteworthy because it is a hospital and social service agency in one. “We really are aware of the individual child and all the kinds of needs that make a difference,” Kiniry said. “If you just talked about drugs and medical treatment, you’d be a hospital. If you just talked about occupational and physical therapy and social workers, you would have a social service facility. What is unique here is the whole spirituality. The collaborative effort really represents a new model for child care.”

It is a model others are following. The center’s collaborative approach has been replicated in Brazil and Africa.

Kiniry, who now serves as the assistant development director, has been hailed as “the keeper of the spirit,” a title she loves, although she places full credit with a higher spirit.

“God keeps the ship afloat,” Kiniry said. “We simply steer it.”

Setting sail

This ship first set sail in the mid-1980s. Its pilots were the Catholic Home Bureau, a foster care and adoption agency of the New York archdiocese; a pastor with an empty convent; directors of pediatrics at Harlem Hospital and Columbia University; a real estate developer/philanthropist and the deputy commissioner of the New York City Children’s Welfare Administration. They all wanted to save the “boarder babies,” infants who “were living and dying in hospital wards because they had no place to go.” Their mothers were either dead, too sick to care for them or didn’t want to. Placing infected babies in foster care at that time was nearly impossible. They had no home to go to until Incarnation Children’s Center opened March 21, 1989, giving them a home for as long as it’s needed. Stays have ranged from two weeks to four years. When children leave now it is usually to foster care because maternal illness and lack of resources in the natural family rule out returning home.

The red brick convent that once housed Sisters of Charity is now a 19-bed residential facility, with a clinic serving between 100 and 130 infected infants and children. Much has been done to create a home-like environment, starting with the lobby, with its overstuffed green-striped armchairs, pink print sofas and large wooden rocking chairs. The floor is covered with a worn Oriental rug. At the side are lots of green plants. Daffodils and red tulips brighten the mantel, and large black and white photos of center children adorn the walls.

On the second floor, quiet in late morning with most of the children at school, a colorful jungle mural lines a wall off which child-size beds, two to a room, fill the tiny cells where the Charity sisters once lived. Each bed has its own small handmade quilt, made for the children by women’s sewing circles around the world. On the third floor, offices are crammed into the small cells. On the roof, indoor and outdoor play areas are filled with bright plastic toys.

The large former community room on the second floor, also known as the Rainbow Room, holds more than a half-dozen cribs, with stands for IVs and feeding bags beside them. Nurses’ assistants feed and rock babies, while some of the sicker ones sleep.

In an isolation room down the hall, a 1-year-old boy who has an eye infection is trying to climb out of his crib. He was baptized the previous week in the center’s chapel. For the ceremony, Kiniry borrowed white altar server robes from nearby Incarnation Church and from St. Anthony’s in Greenwich Village, where she lives, so that each child, including the ones in wheelchairs, could take part in the procession. “He’s a special child of God,” Kiniry said, smiling at the infant, who smiles back and continues trying to escape from his crib.

The day here begins around 6 a.m. as the dozen-and-a-half babies and children are awakened, their vital signs taken and they are given a first round of medication. Notes are made on charts at the bottom of their beds. Then they are dressed and given breakfast. “It’s as noisy as all get out,” Kiniry said. “Who can’t find their shoes? Who doesn’t want to eat or take medicine?”

Buses roll up and school-age children who are well enough -- currently 12 fit the description -- head off to school, many bearing more medicine to be taken later. Some children take as many as 13 different medications each day.

Then the housekeeping staff puts the children’s rooms in order, and for most of the next several hours the hospital side of Incarnation Children’s Center takes over. This includes staff meetings, medical rounds for the remaining children and, on Tuesdays and Thursdays, operating the outpatient clinic in the chapel. This may be the only chapel that has baby and full-size scales not far from its marble altar. It has a conference table and chairs in the nave because this is also the meeting room. The door to the sacristy has been walled off, and that space is now an examining room, perhaps the only examining room in the city with a marble holy water font in the corner.

Around 3 p.m., children begin returning for more checks of vital signs, medications, a snack, homework or maybe a dentist’s appointment. After dinner, volunteers come to read to the children, who are then bathed, given more medicine and put to bed. For the older children, the routine often includes visits with a psychiatrist or social worker. Many of the children have lost one or both parents to death and have suffered additional losses among the center’s children who have died or moved to foster homes.

“It’s sad, the losses and separations,” Kiniry said. “So many losses.”

Many children have been abused at home or in foster care.

“If they’re admitted at 5 or 6 years old, they’ve already experienced severe kinds of trauma,” Kiniry said. “These are emotionally wounded, fragile children.”

Some parents, all of whom live in poverty, visit their children frequently. Others either can’t or don’t.

“One thing I have learned is to let go of judgment,” she said. “It seems the parents do love their children for the most part, but they don’t have the resources or know-how to really care for them. It always kind of makes me lean toward compassion.”

New emphasis on living with AIDS

Since its opening in 1989, about 400 youngsters have received residential convalescent care. In the early days, children rarely lived beyond the age of 2. Now that the average age of children here is 6 or 7, the center’s efforts are increasingly directed toward children living with AIDS, rather than babies dying of the disease, and the most severe needs are being felt in mental health care. These needs will be met more fully when the new 10-bed residential treatment facility for preteens and adolescents with HIV/AIDS and mental and behavioral problems opens next year in a building adjoining the yard.

“These children were not expected to live,” Kiniry said. “They have developmental needs that were never met. [Those needs] don’t go away by themselves.”

Besides education delays, many children suffer emotional problems stemming from anger, depression, fear and low self-esteem, problems that are heightened in “an already emotional child.”

A new outpatient building will open this fall. The $200,000 to purchase a four-story building next door to the center and transform it into a medical facility was given equally by Rosie O’Donnell and Geraldo Rivera, whose support of Incarnation Children’s Center continues. The two additional buildings will relieve crowding in the original space, which was “all right for adult nuns and little babies,” but not for growing children and adolescents.

Seventy-five percent of the center’s nearly $4 million operating budget comes from government sources. The funds provide for medical care, salaries and feeding and clothing the children. With the 25 percent that comes from grants and private sources, the center is able to add touches like the cozy lobby/lounge. “It lets us give it some flair,” Kiniry said. “Otherwise it would be a bare-bones institution.”

Nothing is bare-bones about the attention children receive here. With a ratio of one staff member for every two children, individual needs and individual personalities can be accommodated. Dr. Stephen W. Nicholas, cofounder and executive director, oversees a multi-faceted operation. The center is a training and educational site for Columbia University students in medicine, nursing, social work and law. Pediatric residents from the Babies and Children’s Hospital of New York rotate through the clinic as part of their training. In 1991, the center was approved as a National Institutes of Health clinical trials site, giving children access to previously denied potentially life-prolonging experimental therapy.

“We are enormously blessed with our staff,” said Kiniry, adding that it is not hard to attract workers, who see their contributions as part of something bigger. Many come from the surrounding community of Washington Heights, a working-class neighborhood populated largely by immigrants from the Dominican Republic and their families. “We provide educational opportunities, and they bring what they do best, which is nurture children. We can’t do better.

Biggest challenge

One of the workers, Francia Alvarez, a 31-year-old nurses’ assistant, has been at the center since it opened, having heard about it at her nearby church. Asked about the biggest challenge of working here, she answers quickly. “Letting them go, especially in the last stage. That’s the worst part.”

While Alvarez talks, she tries to coax a 1-year-old girl to eat a lunch of meatloaf, spinach, sweet potatoes and pea soup. Maria, who can hardly stay awake in her high chair, looks up occasionally to check out Mr. Rogers on the television across the room, but wants no part of her meal, a good deal of which is on the front of her striped T-shirt.

Swallowing is painful for her, and despite food therapy that morning, she holds the food in her mouth, refusing to swallow. Even when she is released from her high chair and toddles off holding Alvarez’s hand, the food is still in her mouth. “She’ll spit it out when we get upstairs,” Alvarez says.

Children who have trouble eating are given high-calorie nutritional drinks to compensate for their lack of solid food.

For Kiniry, dealing with AIDS was a far cry from her background. She had had “a wonderful career in education,” teaching science at Cathedral High School in Manhattan, serving as assistant principal of Aquinas High School in the Bronx and principal at a boy’s treatment facility. But she felt called to something else and went to work for the Catholic Home Bureau, where the plight of homeless infected infants impelled her to join the effort forming on their behalf.

What the future holds for these children is difficult to predict. It has been only about 20 years since AIDS broke full on the landscape, and in that time enormous advances have been made in treatment, though little research has been done on pediatric AIDS.

One indication of the changes is a recent birthday celebrated at the center for a 13-year-old who was a patient here as an infant.

And what about the children now being treated? Will they all die in a matter of years, rather than decades? Will the newly baptized infant who wants to get out of his crib or the 1-year-old who has problems eating live to see adulthood?

“It’s all in the hands of God,” Kiniry said. “We don’t know.”

When the time comes that the child, despite all efforts, is at the final stage, Kiniry is there.

“It’s not a natural thing for a little child to die, but you reach a point where you’ve tried everything. You keep thinking their eyes are getting brighter, but they’re not. So you say, ‘Relieve them of their suffering.’ ”

They are laid to rest in the archdiocese’s Guardian Angels plot in the Gate of Heaven cemetery in Westchester County. But even though they are gone from her physically, they remain close to Kiniry’s heart.

“I find myself praying to all the little kids who were here. I say, ‘It was good for you here. Help us to find a way to help other little kids.’ ”

National Catholic Reporter, April 14, 2000