Unprecedented Problems Seen : AIDS--Will Children and Infants Be Next Victims?

As the 6-year-old AIDS epidemic rages on, the next big wave of victims may be thousands of infants and young children, and this development would bring with it virtually unprecedented clinical, social and ethical issues, health officials warned last week at a national conference here.

One major medical problem is the difficulty of using the AIDS antibody blood test to determine whether infants have been infected with the virus. The small size of infants often requires drastic procedures, such as surgery, in order to diagnose some of the common infections associated with AIDS.

And because children develop at a rapid rate, both physically and psychologically, physicians treating young AIDS patients must take special care that treatments do not interfere with growth, doctors said.

As a result of such uncertainties, deciding how to treat children with AIDS is largely a matter of guesswork, according to Dr. James Oleske, a Newark pediatrician. “A lot of studies that should have been done for children were not done because the funding was for adults,” he said.

The plight of children with AIDS--who frequently suffer the same stigmatization as adult AIDS patients--is often compounded by socioeconomic factors not usually associated with other life-threatening childhood diseases, physicians and social workers pointed out.

Most children with AIDS are members of minority groups and are the offspring of infected intravenous drug users, who also may be ill or dying from AIDS. Frequently, these children are abandoned.

The multifaceted problems of infants and children with AIDS were discussed last week at an international Conference on AIDS in Children, Adolescents and Heterosexual Adults amid growing concern that the epidemic is spreading into the heterosexual population, a group that largely has been exempt from the deadly disease thus far.

The problem of children with AIDS is especially worrisome because their number is expected to rise sharply.

As of last week, 444 children in the United States had been stricken with AIDS. And at least 1,000 to 2,000 others already have been infected by the virus and that number could reach 10,000 to 20,000 by 1991, according to Oleske, who is also a professor at the Medical College of New Jersey. (A report by the U.S. Public Health Service in June had estimated that there would be about 3,000 infants and children with AIDS by 1991.)

Among the groups considered at high risk of contracting AIDS are gay men, bisexuals and intravenous drug users, most of whom are heterosexuals.

Source of Infection Told

Until now most infants and children with AIDS became infected through transfusions of blood or blood products or while still in the womb. Health officials anticipate a rise in infant AIDS cases because of indications that the spread of the AIDS virus is rising sharply among intravenous drug users, who often share needles.

Already, infected mothers account for 78% of all children with AIDS. The vast majority of infant AIDS cases have occurred in New York City, Newark and Miami. Experts estimate that 50% to 60% of intravenous drug users in those cities carry the virus.

In California, health officials recently reported that San Francisco’s infection rate among IV drug users rose from 8% to 20% last year and that the epidemic among such drug users soon will spread throughout the state, infecting many heterosexuals.

An infected woman can pass the virus to her offspring, not only during pregnancy but also during actual birth as the baby passes through the birth canal. There is also growing evidence that breast milk can be another route of woman-to-infant transmission.

The infant of an infected woman has a 50-50 chance of also becoming infected. And those who do have a high chance of developing AIDS and dying within a few years.

Diagnosis First Problem

For pediatricians, the first challenge often is simply to diagnose infection. Unlike with adults, there is no easy way to determine whether a baby has been infected until it reaches the age of about 15 months. The blood test that quickly identifies antibodies to the virus--and thus infection--is useless in babies until about 15 months of age because their blood up to then carries a variety of antibodies that have been passed on by the mother, making the test results ambiguous.

Furthermore, doctors are deprived of another test that often is a good indication in adults of AIDS infection. This is a measurement of blood cells known as T-4 cells, which in adults decrease sharply if an individual is infected with the AIDS virus. But because blood cells are replicating in large numbers in newborns, their level of T-4 cells shows no drop even if the virus is present.

This means that unless gross signs of AIDS develop before 15 months, such as pneumonia or some other serious opportunistic infection, doctors cannot be sure whether any illness is due to AIDS or merely to an ordinary childhood condition. As a result, early treatment for AIDS may be delayed.

According to Oleske, about 25% of infected newborns develop serious infections and die within six months of birth.

‘Failure to Thrive’

But if an infected baby does not show clear signs of AIDS shortly after birth, one of the earliest hints of the onset of AIDS is a “failure to thrive,” in which the infant stops gaining weight and gradually wastes away. Often this condition can mark the start of several years of a prolonged bout with infections that strike the lungs, liver, kidneys and often the brain, ending eventually in death.

A common pneumonia among both adult and young AIDS patients is pneumocystis carinii or another respiratory disease seen especially in children called lymphoid interstitial pneumonia. Both are difficult to diagnose and treat, especially in children.

In adults, pneumocystis can be diagnosed by sending a tube down the windpipe into the lungs and snipping a piece of tissue for analysis. But in infants, such instruments are too large, and thus it is necessary to perform surgery in order to obtain a lung tissue.

Even if pneumonia is correctly diagnosed, treatment poses a special problem in babies. Because pneumocystis was rarely seen before the AIDS epidemic, there are few guidelines to help doctors determine the correct dosage of appropriate drugs.

Limitations on Drug Use

For AIDS children, another major problem is that the U.S. Food and Drug Administration has not allowed researchers until recent months to use experimental but promising antiviral drugs such as AZT and ribavirin. Traditionally, the FDA has been reluctant to allow researchers to give experimental drugs to children until their safety has been proven in adults.

The FDA now has authorized several limited trials of AZT and ribavirin among children, but Oleske said the agency should allow investigational drugs to be tested on children without having to wait for the safety results on adults. “They die just as fast as adults,” he said.

In the meantime, pediatricians can do little but resort to standard care with antibiotics, good nutrition and tender loving care, such as not wearing gloves, gowns and masks when touching the children, Oleske said.

“We try to maximize normal living at home rather than in the hospital, if possible,” he said. “We are being completely overwhelmed. That’s all we can do.”

When a child is stricken with AIDS, its mother often “may be overwhelmed by profound guilt or grief and leave the baby in the hospital,” said Dr. Molly Coye, of the New Jersey Department of Health, which has a large number of AIDS cases among intravenous drug users.

Opportunities Limited

If there is no other member of the family, or if foster parents are reluctant to take a child with AIDS, as is often the case, there are few places for them to go.

In New York City, where 93% of the children with AIDS are black or Latino, there are about 150 babies “stacking up in hospitals unable to be placed in foster care,” said Dr. Stephen Joseph, the city’s commissioner of health. “It is a setting which, to say the least, is not optimal for their development.”

Furthermore, there is no organized group to speak for children with AIDS or their parents, unlike “hemophiliacs, or gays, or children with cancer,” Oleske added.

“They don’t have an association for parents of kids with AIDS. Elizabeth Taylor isn’t doing benefits for them. Services have been tough,” he said. “There are people who do care--but not enough of them.”

Oleske said there is a great need for hospice and “respice” care--”to give mothers a place to leave their kids for a respite, for a few hours.”

In Elizabeth, N.J., he said, a small house is being turned into a home for these children.

Boston Center Opens

Three weeks ago in Boston, a four-bed residential unit opened for children with AIDS, AIDS-related Complex (ARC), and children without symptoms who are infected with the AIDS virus. The unit received a $179,909 grant for its first eight months of operation from the state of Massachusetts. There have been 18 cases of pediatric AIDS in the state.

The unit, believed to be the first of its kind in the nation, also has received donations from private foundations and local Boston sources, such as hotels and department stores, which have donated furniture, according to Nancy Karthas, a nurse with the project. A local quilting group has even given some of its quilts to the center, she said.

The unit is neither a hospital nor a hospice, she said. When children become ill with infections, they are hospitalized.

It is a place for AIDS children to live and to receive hands-on care, when there is no other place for them to go.

“It’s a warm, caring, home-like environment,” Karthas said. “It provides 24-hour care for these children when their parents can no longer care for them.”