I am a specialist in pediatric infectious disease and have cared for children with Human Immunodeficiency Virus (HIV) Infection or Acquired Immunodeficiency Syndrome (AIDS) since 1983. I am writing to you to explain a little about what happens to these children and their families.
Over 90% of the children with HIV infection or AIDS are infected by perinatal transmission (occurring during pregnancy, during delivery, or soon after). This means there is a mother, and often a father or perhaps even a sibling in the family who is also infected with HIV.
There are several common scenarios of "discovering" that a child is infected with HIV. Often the child is noted to be sick with a specific kind of infection (e.g. Pneumocystis carina pneumonia, or PCP) or other signs suggestive of HIV infection even before the mother or father are sick or even suspect they are infected. Other times the child is tested for HIV infection while he/she is reasonably healthy and the mother or father are already ill with signs of HIV infection. Occasionally, one or both parents have already died and a relative or foster parent brings the child to be tested. In every case, the diagnosis of HIV infection is somehow unexpected and an incredible shock. Even as the shock of the "loss" of a healthy child is being realized there are other losses which are rocking the life of the family. Clearly, the Human Immunodeficiency Virus infects individuals, but it also affects every member of the family.
At the horrific moment of diagnosis, all the fear, superstitions, misconceptions, and prejudice that continue to swirl around and cloud our society's and individuals' view of HIV infection cast a shroud of fear, secrecy and isolation over the family. All the family's hopes and dreams are destroyed by the fear of this illness and doubt of what the future will bring.
It is at this same moment that comprehensive and compassionate care for the individuals and the whole family must begin. Even as numerous tests are being done in order to assess the exact health status of the child, a medical plan must be activated. This plan must treat the specific problems, accentuate the child's strengths, and build the child's ability to fight this illness in an attempt to rekindle hope for the future. Along with this plan must come understanding and support from other family members, friends, neighbors, the community and the medical team to push back the fear and isolation, and to help the child and family face the realities of the illness, the treatments, and the future.
The realities of the illness include many scary things. there are frequent and/or serious infections of the ears, skin, sinuses, lungs, intestines, brain, etc. which can disrupt the child's normal growth and development, or make it hard for him/her to breathe, eat, or even play. there are changes in the child's body that are often difficult to explain like vomiting, weight loss, fevers, swellings, rashes and others. There are even rare cancers which affect persons with HIV more than others. Although there are some children who do grow up, are able to go to school and may even become teenagers, the reality is that most children born with HIV infection die before they reach their fifth birthday.
The realities of the treatments include many things that to a child are even scarier than the illness. There are numerous visits to the doctor which frequently involve blood drawing, injections, X-rays, or various other tests. Occasionally, the treatment must occur in the hospital with all the fear, separation and stress that can occur on top of the treatment itself. The treatment is often taking several medicines to prevent infections, to correct a specific problem, or to combat the HIV infection itself. Even the child's daily routine at home, away from the doctor and the hospital, is disrupted by trying to take various medicines; they do not understand why they have to take them, they do not want to take them, they may have trouble taking them (due to side effects or difficulty with ingestion), and often they taste terrible!
If there is any consistent reality for the future of these children and their families, it is that illness and death seem to be waiting for them. The realities of the illness and the treatments are so invasive on their daily lives that it seems that illness and treatment are their lives. Over any reality hangs the fear that even the slightest change or problem with the child's health means that the "virus" is winning; that illness and death are right there. One father explained to me that they wake up every day and don't dare think anything about the day until they see if their daughter is okay for today; then it is all right and they know they have one more day.
In the midst of all the medical care that goes on for these children and their families, there must be support and empowerment of the children themselves and the family, to find hope beyond the treatments and to reclaim their lives. More than just good medical care is needed. More brilliant research or promising new therapies are needed. The support and understanding of family, friends, neighbors and the community must be there. All of us must be aware of and understand current medical knowledge about this illness. We must recognize that HIV infection, like any other illness, affects all of us and can afflict any individual, family or community as it is already doing in "our world", the Hudson Valley. We must embrace, support and bring to actuality the idea that comprehensive, culturally appropriate and compassionate medical care is the right of every child, woman and man regardless of the illness involved.
Please join me and the many others throughout the Hudson Valley who are fighting against infection, each in their own way. Join us in supporting Sunshine For HIV Kids. I believe that it is a program that we can each participate in to improve and continue HIV education and awareness in the Hudson Valley through the work of AIDS related Community services (ARCS), and to share in and expand the moments of sunshine experienced by children with HIV infection who attend the summer camp program run by Birch Services.
Thank you for your compassion and your support of this program vital to all of us in the Hudson Valley.
Robert M. Lawrence, M.D.