The story of acquired immunodeficiency syndrome in children began at our hospitals. In 1979, two unrelated children were referred to the pediatric immunology clinic at University Hospital with serious, recurrent bacterial infections, including pneumonia. These children presented a puzzling picture of immune deficiency not previously seen in the pediatric age group. By the time those first articles on AIDS appeared in the New England Journal of Medicine, five children had been identified with symptoms that were identical to those reported in the gay men. In addition to their recurrent infections and immunological abnormalities, these five kids shared one common factor: All had been born to women who were drug addicts. And these women were also becoming sick, developing symptoms very similar to those of their offspring.
The widespread acceptance of the fact that AIDS could occur in children did not occur until 1983. But whether accepted as fact or not, by 1983 it had become clear to everyone working in the Bronx that something terrible was happening.
Although pediatric AIDS started with a handful of cases, by the mid-1980s a full-fledged explosion had begun. The Centers for Disease Control in Atlanta estimate that by 1990 a total of three thousand children in the United States will become sick with AIDS. Scientists who have watched the epidemic develop believe this figure is an underestimate.
What this means to those of us working in the Bronx is that there are many infants and children who are or soon will become sick with AIDS and who will ultimately die because of it. At this moment, there are currently ten to twenty children with AIDS and the AIDS-related complex hospitalized in Jonas Bronck, Mount Scopus, University, and West Bronx hospitals. These children are in the hospital for one of two reasons. Some are critically ill; these patients have serious infections, cancer, and chronic lung disease. They fill beds in the ICUs for extended periods, draining resources and causing the staff who care for them severe emotional distress.
Other children with AIDS who are hospitalized are not sick, at least not initially. These kids live in our hospitals because they have no place to go. Their parents are drug addicts, many of whom have become sick themselves, and some have died. Grandparents and other family members have abandoned them; they’ve become pariahs because of their disease. Although some manage to escape from the hospital for some short period of time, most members of this group wind up living out their short lives knowing no home other than a steel crib in a three-bedded room at the back of 8 East or 8 West at Jonas Bronck Hospital, knowing no family other than the nurses, house officers, and medical students who provide their care.
But these hospitalized patients are only the tip of the iceberg. There are over a hundred sick children in our system currently being followed by the immunologists. Another hundred have already died. And these numbers are growing daily. Unless a cure is miraculously found, all these children will presumably die.
There’s no question that AIDS has altered every aspect of modern medicine. It has radically changed residency training in virtually every specialty, including pediatrics. When I was an intern, there were few deaths on the pediatric wards. In fact, one of the reasons I chose to specialize in pediatrics was because children tended to recover from illnesses. But thanks to AIDS, all that’s changed.
Amy, Mark, and Andy, as well as every other intern and resident in our program, have each been involved with at least one sick and dying AIDS patient. Over the past couple of years, about one child with AIDS has died every month. Occasionally the death seems almost like a blessing; these children are alone, with no loved ones; they are comatose, lingering on day after day in a vegetative state, with no hope of survival. But most of the time the death of a child, any child, is a tragic, deeply disturbing, and anxiety-provoking event for the house officers, nurses, and other staff members who care for the child and who stand by helplessly watching, unable to do anything to alter the course, as the child grows sicker and weaker until he or she ultimately dies.
But the inevitability of the death of the patient is only one factor that’s changing the way house officers approach their charges with AIDS. The second and perhaps dominant force is tied to our current knowledge of the way in which the human immunodeficiency virus, the agent that causes AIDS, is transmitted. House officers know very well that if they stick themselves with a needle that has been in the vein of an HIV-infected individual, they can become infected. And becoming infected is equivalent to a death sentence.
When I was an intern, we drew blood, started IVs, even did mouth-to-mouth resuscitation without giving it a second thought. We knew of few risks and little harm that could come to us from stabbing ourselves with a needle or breathing in secretions from a patient who had had a respiratory arrest. Now it’s mandatory that all house officers wear gloves whenever sticking a needle through the skin of any patient, regardless of whether the patient is thought to have AIDS or not. This increased use of gloves has caused a worldwide shortage of rubber. New types of gloves advertised as being resistant to HIV are being marketed. In the emergency rooms, nurses have been issued goggles to be worn over their eyes when around a patient who is bleeding profusely. Some residents don surgical gowns and masks just to enter a patient’s room. And forget mouth-to-mouth resuscitation! What was once knee-jerk reflex is now something that house officers, with good reason, try to avoid at all costs.