About This Issue
Dear Network Members:
In June 1992, the General Board of Global Ministries and the
Latin America Council of Evangelical Churches (CIEMAL) sponsored
HIV/AIDS Ministries Workshops in Sao Paulo and Recife, Brazil.
During those workshops, I was a panel speaker on the subject of
Children and AIDS. I told the story of a child living with AIDS.
The boy is now nine years old and I have had the privilege of
being one of his care providers for seven years.
I have not written about him before. In what follows he has been
given the name Carl to protect his identity. Carl's story,
however, cannot be separated from the story of his family or the
situation of the other 4,480 children in the United States who
have AIDS.
At the end of the Focus Paper my love for Carl becomes a
statement of advocacy for the boys and girls, men and women who
could become the fathers and mothers of children like Carl. Carl
is infected with HIV because his mother transmitted the virus to
him during pregnancy. What happened to Carl and his mother need
not happen to others.
The figures given at the end of the paper speak to the reality
confronting us. One in every 250 persons in the United States is
infected with HIV. HIV and AIDS are now the third leading cause
of death among U.S. adults. Soon HIV/AIDS will be one of the top
five causes of death for women of childbearing age in this
country. In addition, the number of cases of AIDS attributed to
heterosexual transmission has increased by 21 percent.
In this second decade of AIDS our churches must not become
complacent about HIV disease. A lot of hard work is still needed
to slow the spread of HIV infection, to educate and protect our
children and to extend the church's ministries to those whose
lives have been touched.
With kindest regards,
Cathie Lyons Associate General Secretary
Charles R. Carnahan Executive for HIV/AIDS Ministries
"HAVE I DIED ALREADY OR AM I STILL ALIVE?"
For seven years, I have had the privilege of
being a care provider to a child living with
AIDS. Carl is the name I use for him in
this Focus Paper to protect his identity.
I have been asked frequently to write about
Carl. This is the first time I have done so.
His story is preceded by updated information
about children and AIDS, some of which has
appeared in earlier Focus Papers. The
statistics in this paper are current through
March 31, 1993.
I have used as the title of this paper a
question Carl asked on a bright, crisp winter
morning in February 1990. Questions about
life and death are a part of the terrain
covered each day by care providers. They
are part of the joy and the pain of being
there.
The epidemic of HIV infection and related illnesses worldwide is
no respecter of age, background or culture. Nor is it a crisis
which affects individuals in isolation from one another. This is
particularly true with regard to HIV infection and children. In
the vast majority of instances, HIV infection in an infant
indicates that the infant's mother is infected, as might be the
child's father and some of the infant's brothers and sisters. The
reality of HIV infection in children speaks to the need for
family-wide services, community-wide AIDS prevention education
for all age groups, and effective drug prevention and treatment
programs which are sensitive to ethnic/racial concerns and which
are designed to serve women and youth, as well as men.
In the United States, as of March 31, 1993, a total of 4,480
cases of AIDS in children under 13 years of age had been reported
to the Federal Centers' for Disease Control and Prevention in
Atlanta. Four percent of these cases have been among children
with hemophilia/coagulation disorders who received infected
transfusions of the blood's clotting factor. Seven percent have
been among other children who have received HIV infected
transfusions of blood, blood components or transplanted tissue.
In two percent of childhood cases the mode of virus transmission
remains unknown.
The remaining eighty-five percent of children with AIDS in the
United States have one thing in common. They were born to mothers
who were infected with HIV and who passed the virus to their
babies before, during or shortly after birth. The fastest growing
number of children in the United States who are infected with HIV
were infected through mother-to-fetus/infant transmission.
The infections and malignancies common to HIV-infected children
are different than in adults. In addition, the progression of HIV
disease differs in children who received infected blood products
and children who were born to infected mothers.
The progression of HIV infection in children who received
infected blood products varies according to their age and the
type of blood product they received. People with hemophilia who
are HIV infected tend to develop more normally and remain at the
asymptomatic stage longer than perinatally infected infants.
Once these children progress to clinical AIDS, however, the
course of the disease is similar to that found in perinatally
infected infants.
Common childhood infectious illnesses are likely to be severe in
HIV-infected infants. As the infection progresses, infants can
experience anemia, failure to thrive, fever, chronic diarrhea and
thrush. Adequate nutrition of HIV-infected infants can be an
ongoing problem. Neurological involvement is common. Many
children have significant central nervous system manifestations
of HIV infection as well as secondary bacterial and fungal
infections of the central nervous system.
AIDS in children can be a developmentally disabling disease and a
significant proportion of infected children show develop- mental
delays prior to exhibiting other signs of disease. Early
intervention, however, can reduce the impact of these delays. As
the disease progresses developmentally normal infants can become
severely disabled while others remain normal or relatively
unimpaired at four, five and even ten years of age.
One Child's Story
Carl is nine years old and has AIDS. His primary care provider is
his great grandmother who is 78 years old and has numerous health
problems. For seven years, the person I live with and I have
provided Carl with a secondary home and the extended care-
provider services which are so important to his well-being and
that of his Grannie.
Carl was born infected with HIV. His antibodies to the virus
were detected at 19 months after birth to a mother who is HIV
positive and a drug user. His mother's struggle with drugs and
alcoholism continues. Carl has never lived with his mother whose
substance use makes it impossible for her to give him the
constant care he needs. Carl's father and three year old brother
are HIV positive. His younger sister is not infected.
Carl was diagnosed with AIDS at 21 months when he developed a
near fatal case of viral meningitis. Early in his second year, he
developed a lung abscess and surgery was performed. Late in his
second year he developed acute lymphoid interstitial pneumonia, a
form of pneumonia common among infants and children with AIDS.
During this period Carl became profoundly hard of hearing in one
ear because of high fevers. He has marked developmental delays.
He has had tuberculosis and subsequent bouts of pneumonia. In
February 1990, at nearly 6 years of age, Carl was admitted to a
pediatric AZT drug trial. Since then, he has been relatively free
of acute illness.
His difficulties now fall within the category of chronic and
degenerative manifestations of HIV disease. He suffers from
increasing tiredness, diarrhea, lack of appetite, oral thrush and
repetitive skin disorders including scabies and ring worm.
The present course of Carl's illness is like that of many
children in the United States who were infected perinatally and
who have lived for 7 - 10 years with clinical AIDS. He does not
have the energy today he had six months ago, his appetite is
failing, he runs two to three fevers a week. Two weeks ago he was
hospitalized with pneumonia.
Carl is a child living with AIDS. His entire life has been
compromised by illness. He has spent more days in hospitals and
emergency rooms and not feeling good than I have known in my 48
years.
Perhaps the most remarkable and important thing about Carl is
that in every other way he is a normal child. He is completing
his third year of school. He wants a dog. He wants friends and
companionship. He wants to do what other children do. For his
birthday this year he wanted a girlfriend. He has the some hopes
and fears of every child. He has dreams just like you and I.
Carl believes in God and will not let anyone remove from his neck
the cross his Grannie gave him a few years ago.
Because Carl has known acute and prolonged illness, he has had to
deal with questions that we as care providers have not always
been able to answer with ease. On a snow white, crystal clear,
winter day two years ago, Carl asked simply: "Have I died
already, or am I still alive?" A week later he asked: "How soon
will I grow up and take care of sick children the way Dr. Sanders
does?" Last week he asked with regard to our oldest dog: "why
can't Thika be sick instead of me?" Earlier this year after I
returned from Russia, he said: "Cathie, I want you to quit your
job so we can be together like we are supposed to be." The
question Carl asks the most goes like this: "Does having AIDS
mean I am a bad boy?"
Carl's questions are an invitation to us as grown-ups to live in
a world with him that is not of his choosing or our choosing. At
times Carl's questions tempt us to run away and avoid talking
about death--that most difficult of subjects. Carl's questions--
like the same questions on the lips of any child--are pure and
honest and demand an appropriate honesty on our part. His
questions about what exactly will happen to him next week, next
month, or by the end of the summer are questions about which we
do not have exact answers so we give him the only answers we
have. They go like this: "Carl, you're a good boy. Having AIDS
has nothing to do with whether you are good or bad." "Carl,
believe me, I'd rather be with you than anywhere else on earth."
"Carl--children, animals, and grown-ups all get sick. Someday
Thika might get sick and you'll be sad just like she is sad
because you are sick."
Carl is one of nearly five thousand children in the United States
who have AIDS. Like Carl, the majority of these children have
mothers who are HIV positive and who transmitted the virus to
their children before, during or shortly after childbirth. The
work we do with Carl and must do in loving support and nurturing
care of all children who have HIV disease cannot be done in a
vacuum. To love and care for Carl, means loving and caring about
the girls and boys, women and men who could become the mothers
and fathers of infants and children like Carl.
The ominous prediction that if current trends continue, AIDS
could be one of the top five causes of death in children in the
United States in the next four years speaks to an urgent and
tragic reality confronting not only North America but every
region of the world. Pediatric and childhood HIV infection can be
prevented, but it will take an all out effort to address the
needs of those individuals whose behaviors put them at greatest
risk of contracting and transmitting the virus.
The epidemic of HIV infection in children is rooted in the
problems of HIV infection in women, intravenous drug use, and
male attitudes about sexual responsibility.
The strategies for reducing the transmission of HIV to children
are not unique. Prevention of pediatric HIV infection can be
accomplished by measures which include, but are not limited to,
screening blood and preventing adult HIV infection. Education,
access to drug treatment, access to family planning services, use
of barrier methods, access to HIV antibody testing, and access to
medical and social services are necessary components of HIV
prevention.
The prevention of mother-to-child transmission of HIV requires
risk reduction strategies which address the I.V. drug use and
sexual behaviors of women and men alike. Women must have access
to culturally sensitive education about the risk of HIV infection
associated with substance use, types of barrier methods
available, and what they can do to protect themselves from sexual
partners with HIV infection.
The tragic reality confronting millions of women across the world
is that they have no bargaining power or means of negotiating
safer sexual practices within or beyond the context of marriage;
nor do they have easy access to educational materials, the group
solidarity, status and support of society and men which is
necessary if their health and the health of their children is to
be protected.
I do not like the fact that Carl's mother transmitted the virus
to him; nor do I like the fact that for seven years there was no
place for her in New York City's substance abuse treatment
programs; nor do I like the fact by the time a program had space
for her she was not admitted for another two years once it was
discover that she was HIV positive; nor do I like the fact that
by the time she did enter a treatment program her many years of
using drugs had conspired against her. Carl's mother has not been
able to break her bond with drugs.
I pray to God that Carl's mother and father and little brother
never develop clinical AIDS. I pray to God that they will never
be stretched on the rack that Carl has lived on--body and soul--
for his entire life. I pray that Carl's little brother will never
be so acutely sick or chronically ill that he will ask: "Have I
died already or am I still alive?" I pray that the hatred and
shame that society would like to use as a battering rod against
Carl's mother and other women like her might turn to compassion
and a thorough analysis of the factors that have led so many to
such depths of despair and need for escape that drugs looked like
a way out. I hope that the platitudes, the self-righteousness and
the religious indignation hurled against women who have sex for
money, women who are drug users or who have sex with drug users
will cease. Responses of indignation and self-righteousness are
not preventing the perinatal transmission of HIV. Rather, they
continue to reinforce assaults against, and disdain for, women
who are in trouble and who are at risk of terrible mental,
physical and spiritual brutality. HIV infection and AIDS are
brutal enough. Ask any child, youth or adult. Ask any mother or
father.
I love Carl. I'll love him to the day he dies. And after he dies,
I'll love him until the day I die.
In the worship resource which Health and Welfare Ministries
dedicated to Bishop Mutti and his family in
remembrance of their sons--Tim and Fred--who died from the
complications of AIDS, the following was said about the faces
AIDS wears.
The face that AIDS wears is always the face of a person who
is created and loved by God. The face that AIDS wears is
always the face of a person who is someone's mother of
father, son or daughter, brother or sister, husband or wife,
lover, loved one or best friend. The face that AIDS wears is
always the face of a person who is the most important person
in someone else's life.
Sometimes the face that AIDS wears is all of these faces
captured in the portrait of one family.
Every time I look at Carl I am reminded that the body of Christ
has AIDS. With every setback he endures I know that the body of
Christ is being touched and torn and tortured. As persons across
the church reach out in loving ministry to the crisis in their
midst, I know that Christ lives and that the church can be a
place of openness where pain finds Christ's mercy and the love
and companionship of all who bear his precious name.
It is from within the body of Christ that we can find the
empowerment necessary to work unceasingly for an end to the AIDS
crisis which engulfs the world and those we love.
