Center Is Young AIDS Patients’ Only Home : Health care: House for children with no one to provide for them is full. Another opening soon already has a waiting list.
A neat stucco house on the edge of Culver City is home to six babies linked by a dual tragedy: all are infected with the AIDS virus, and none have parents capable of caring for them.
The very existence of the home--run by a nonprofit group called Caring for Babies With AIDS--symbolizes what many observers say is the changing character of pediatric AIDS in Los Angeles.
For the record:
12:00 a.m. June 5, 1991 For the Record
Los Angeles Times Wednesday June 5, 1991 Home Edition Metro Part B Page 3 Column 6 Metro Desk 2 inches; 40 words Type of Material: Correction
AIDS program--A program coordinating medical and social services for children infected with the AIDS virus was incorrectly identified in an article May 30 as the Los Angeles County Pediatric AIDS Comprehensive Care Center. The correct name is Los Angeles Pediatric AIDS Network.
Through most of the 1980s, children with AIDS could trace their infection to blood transfusions tainted with the human immunodeficiency virus (HIV), the syndrome’s cause. The diagnosis was devastating to their families, but most parents were able to rally to care for their children.
The new cases, however, are almost all mother-to-child transmissions of HIV that the mothers contracted through sexual activity or drug use, and many involve seriously troubled families. Experts say that these newest victims will require far more support than Los Angeles County has previously had to provide for HIV-infected children.
One baby in the Culver City home, for example, recently came back from a visit home with two broken legs, the apparent victim of abuse. Another child’s mother is a habitual drug user, according to officials at the home, and barely able to care for herself. The mothers of three others suffer from severe mental illness.
Even in stable homes, a mother’s own infection may leave her too sick to care for the child she infected prenatally. At the very least, says Marcia Gonzales, a pediatric AIDS social worker at Childrens Hospital, these mothers will need help with baby-sitting and housework when their illness requires hospitalization.
They may also need food, housing and transportation to medical services. If a mother dies and there are no relatives able or willing to care for her children, foster care or facilities like the CBA home increasingly will be where these youngsters live out their lives.
The CBA home is a relatively new link in the network of support. The first such facility in the West, it was full the day it opened in August, testimony to the need. A second, 8-bed home that CBA plans to open next door has a waiting list of 26 children, currently in hospitals, according to Sheri Szeles, CBA’s executive director.
Szeles and others say that Los Angeles needs more comprehensive services, including specialized foster homes and facilities like the CBA house. Adding pressure is the possibility of a surge in the number of cases in Los Angeles, though not as dramatic as the crises that enveloped New York, Newark, and other East Coast cities in the late 1980s.
California health officials have charted a slow but steady increase in the number of women with AIDS--a harbinger of pediatric cases to come. They expect the total of cases in 1989 and 1990--not yet compiled--to exceed the total for the previous six years. At the current rate, the number of women with AIDS will double every two years, according to the state Office of AIDS.
Marcy Kaplan, director of the Los Angeles County Pediatric AIDS Comprehensive Care Center, says that she is struck by the magnitude of the children’s needs today, compared to the mid- to late 1980s, when most of the cases resulted from transfusions of tainted blood, or blood clotting supplements used in the treatment of hemophilia. The center, based at Childrens Hospital, oversees the CBA home and other services for stricken families.
“At least the parents were healthy then,” Kaplan said. “Not now. . . . We’ve shifted from largely middle-class transfusion cases with healthy parents and private health insurance to families that already were dysfunctional and impoverished long before AIDS came along and complicated things.”
She cites the case of a grandmother caring for two infected children of her infected daughter. The daughter has a long history of prostitution--the likely source of her infection--and currently is pregnant with a third child.
The oldest child, who is 3, has started to come down with the early infections that presage AIDS. In addition to her responsibilities for the children, the grandmother works full time, leaving the sick child and 9-month old sibling in the care of other family members.
It is an arrangement stretched so thin that Kaplan worries if it will hold when the third child is born. For the moment, though, the grandmother is getting by with the help of center-sponsored educational and parent-support programs.
Nationally, there have been 2,800 cases of AIDS in children since the epidemic began in 1982, a figure that federal health officials say will reach 6,000 to 20,000 over the next several years.
These projections are based on cases of full-blown illness and estimates of the number of women of child-bearing age infected with HIV, a much more difficult factor to pin down. A survey of pregnant women in California shows 1 in 1,568 to be infected. In Los Angeles County, the rate is slightly higher: 1 in 1,265. Both calculations are based on 1989 data.
“We are seeing the infection in very young women that you wouldn’t normally consider high risk,” said Dr. Yvonne Bryson, a professor of pediatrics at UCLA and director of the Los Angeles County Pediatric AIDS Consortium, a coalition of seven hospitals providing care to HIV-infected children. “Their only risk factor is that they are sexually active.”
Other women giving birth to infected children are intravenous drug users, presumed to have gotten HIV through syringes contaminated with infected blood. AIDS prevention groups and county health officials are trying to educate drug users about the dangers, and are trying to supply them with bleach to sterilize needles.
Sexual transmission of the virus, however, is more difficult for women to guard against. An infected partner can have no symptoms of illness for years, and therefore be unaware that he is infectious. He may also choose not to disclose a history of drug use, bisexuality or other high-risk behavior.
Studies of women with HIV indicate that the majority thought they were safe, and learned the risks of past sexual encounters only when they or their children turned up infected.
“The big X is the number of women infected through their partners,” said Dr. Yvonne Maldonado, director of the pediatric AIDS clinic at Stanford University and head of an HIV monitoring project in Northern California.
In East Coast cities, where the virus spread rapidly through drug users to women of child-bearing age, the resulting cases of pediatric AIDS have severely taxed hospitals and social services since the late 1980s.
Los Angeles County--primarily because drug users became infected later in the epidemic and engage in less needle-sharing--has nowhere near as many cases, logging only 95 pediatric AIDS cases since 1981, compared to 755 in New York, according to the federal Centers for Disease Control.
Nor is a surge in cases imminent, according to Dr. Lorene Mascola, head of a Los Angeles County monitoring project on pediatric AIDS and HIV infection. She predicts 40 to 60 new cases a year in the county in the near future.
But Bryson and others on the front lines of pediatric AIDS treatment worry about complacency arising from relying simply on such projections. They cite the epidemic’s shift in the last two years from gay white men to poor, minority communities as a factor that could push the number of infected babies higher. Indeed, the state survey of pregnant women showed that blacks have an HIV infection rate seven times that of whites.
More important, that shift also is expected to severely tax county health and social service programs. The timing could not be worse, as these chronically under-funded programs face the prospect of more cuts next year, when California grapples with its projected $14.3-billion deficit.
Even now, standard health and social services are not enough to help many of the families of the children in CBA’s Culver City facility. None of the children there have been able to return to their families, although the home originally was envisioned as a place were babies stayed temporarily until their mothers or other relatives could care for them.
The only ones who have left have gone to foster families, Szeles said.
The CBA facility provides a homelike setting at considerably less cost than if the child stayed in a hospital--the only other option besides foster placement for HIV-infected children.
But the CBA home still is more expensive than having these children home with their parents. Los Angeles County pays CBA $3,508 a month for each child at the facility, according to Szeles.
That price tag doesn’t begin to reflect the physical and emotional costs to each family. Kaplan, director of the AIDS Comprehensive Care Center, cites a case involving a mother sick with AIDS and a 4-month old child already developing symptoms. An older child is not infected. The father is marginally employed. Financially, the family is barely scraping by. Gonzales, the center’s social worker, said they need such basics as food and help with transportation to doctor’s appointments because the family lacks a car and the mother is too weak to get by on public transportation.
In these cases and others, the children are good candidates for ending up in foster care or a facility like CBA’s. One of the center’s major efforts is recruiting more foster parents willing to take AIDS-stricken children.
Such parents are hard to find, Kaplan said, although so far there has been no backlog of children awaiting foster placement.
“What really has saved us so far is that the numbers have not overwhelmed us,” Kaplan said.
AIDS: Women and Children at Risk
The prevalance of HIV infection in pregnant women, based on a 1989 survey:
CALIFORNIA LOS ANGELES COUNTY *Overall rate 1 in 1,568 1 in 1,265 *Blacks 1 in 338 1 in 301 *Latinas 1 in 1,927 1 in 1,629 *Anglos 1 in 2,551 1 in 2,536 *Asians 1 in 9,179 1 in 3,189
SOURCE: Office of AIDS, California Department of Health Services
LOS ANGELES COUNTY:
Los Angeles County cases of AIDS and HIV infection in children under 13 as of March 31, 1991: Total AIDS: 95 (60 deaths)
Total HIV infection (children who have not yet progressed to AIDS): 128
Suspected HIV (infants too young to be definitively tested): 65
Pediatric Cases Traced to Maternal Infection*
Sources of infection: Mother has HIV infection: 60
Mother is intravenous drug user: 50
Mother’s sex partner is IV drug user: 29
Mother’s sex partner is HIV positive: 18
Mother had tainted transfusion: 11
Mother’s sex partner is bisexual: 5
Mother’s sex partner is hemophiliac: 2
Other or unknown: 6
* Parents may have several risks, but were categorized according to the most likely cause of infection in child.
Racial Distribution of Cases
SOURCES: Pediatric AIDS Surveillance Study, Los Angeles County Department of Health Services.