Special
Report Children with HIV/AIDS
By RETTA BLANEY
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 Childrens 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
Kinirys eyes. She had taken the fragile child out to the centers
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, Thats
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 Gods presence and they allow God to be God for
all of us.
Kiniry, one of the centers 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 centers 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 Childrens Center, New Yorks 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,
youd 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 centers
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 Childrens 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
didnt want to. Placing infected babies in foster care at that time was
nearly impossible. They had no home to go to until Incarnation Childrens
Center opened March 21, 1989, giving them a home for as long as its
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
womens 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 centers chapel. For the ceremony, Kiniry borrowed white altar
server robes from nearby Incarnation Church and from St. Anthonys in
Greenwich Village, where she lives, so that each child, including the ones in
wheelchairs, could take part in the procession. Hes 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. Its as noisy as all get
out, Kiniry said. Who cant find their shoes? Who doesnt
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 childrens rooms in
order, and for most of the next several hours the hospital side of Incarnation
Childrens 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 dentists 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
centers children who have died or moved to foster homes.
Its sad, the losses and separations, Kiniry
said. So many losses.
Many children have been abused at home or in foster care.
If theyre admitted at 5 or 6 years old, theyve
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 cant or dont.
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 dont 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
centers 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]
dont 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 ODonnell and Geraldo Rivera,
whose support of Incarnation Childrens 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 centers 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
Childrens 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 cant 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. Thats 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 Alvarezs hand, the
food is still in her mouth. Shell 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 boys 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?
Its all in the hands of God, Kiniry said.
We dont know.
When the time comes that the child, despite all efforts, is at the
final stage, Kiniry is there.
Its not a natural thing for a little child to die, but
you reach a point where youve tried everything. You keep thinking their
eyes are getting brighter, but theyre not. So you say, Relieve them
of their suffering.
They are laid to rest in the archdioceses 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 Kinirys 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
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