Acquired Immune Deficiency Syndrome, caused by the Human Immunodeficiency Virus (HIV).
No cure has been found yet for this disease, although treatments have extended the lives for many afflicted with the illness. HIV/AIDS is also a problem for noninfected people, particularly the children of HIV-infected mothers. According to a 1998 issue of Child Welfare, about 125,000 children in the United States will have lost their parents to HIV/AIDS by the year 2000.
About 7,000 women with HIV give birth to babies in the United States each year, and some of the children are seropositive and at risk of developing AIDS. Although a newborn may test positive for HIV, the result may be a false positive reflecting the mother's antibodies. Sophisticated tests can reveal within weeks or months whether or not the child has the HIV infection.
Pediatric HIV infection is a problem worldwide. According to a 1998 issue of AIDS Weekly Plus, more than 500,000 babies around the globe were infected with HIV/AIDS in 1997, nearly all through birth or breast-feeding after birth. In 1998, the World Health Organization (WHO) estimated that 16,000 new HIV/AIDS infections occurred every day worldwide, and the highest rates were found in persons of childbearing age.
HIV infections will have an increasingly devastating effect on children until a cure is found. Children can contract HIV/AIDS in utero from an infected mother and can also contract the disease after birth through the mother's breast milk. However, if the infected mother is treated with medication such as zidovudine (AZT) during pregnancy, the transmission rate is slashed by as much as two-thirds. This means that instead of 30-50% of mothers with HIV/AIDS transmitting the virus to their newborns, treatment can decrease transmission to less than an 8% risk. In addition, when mothers realize that they have HIV/AIDS, studies have shown that they almost universally agree to avoid breast-feeding.
For these reasons, increasing numbers of advocates are calling for universal testing for HIV in all pregnant mothers. In late 1998, according to AIDS Alert, the Institute of Medicine in Washington, D.C., urged that universal testing for HIV be part of prenatal treatment for all pregnant women. Some states, however, such as California, New York and Massachusetts, ban mandated universal HIV testing of pregnant women. Proponents of testing say that federal laws could be created to overrule state laws or state laws could be changed because of the potential medical benefits to both mother and baby. Opponents fear that universal testing could harm the doctor-patient relationship and that mothers would forgo obtaining prenatal care for the fear of being tested. Another issue is the possible infringement of the pregnant woman's civil rights.
Finding Foster Families and Adoptive Families
The problem with finding adoptive or foster families for children with AIDS is complicated by many states' requirement to keep the AIDS condition confidential. Although public understanding has increased with education, children living with the HIV/AIDS virus are still shunned by some people, including other children as well as adults. In addition, even when a child does not have AIDS, the knowledge that his parent has the disease can cause the child to be excluded by others.
According to a 1998 issue of Child Welfare, "The reality is that children face discrimination and rejection when they tell friends or schoolmates that their parent has HIV. If the children are to keep the secret, parents should identify a few key 'safe' people with whom the child can talk about their parent's illness."
In addition, some HIV+ parents do not want social workers to tell extended family members. Sometimes HIV+ mothers would like relatives to adopt their children but they are fearful of revealing their HIV/AIDS status and incurring the wrath and contempt of family members. They may also fear that they or their children will be abandoned by relatives if the HIV becomes known.
Sometimes the children of the HIV+ parent are already in the foster care system and the foster parent may be approached to determine if she or he would be interested in adopting the child. In this special case, sometimes social workers arrange an OPEN ADOPTION, in which the ill mother meets and talks with the foster parent about the adoption possibility. There are also laws in some states, such as New York and Illinois, called "Standby Guardianship" laws, which allow the mother to grant partial custody (not foster care) to the eventual custodial family.
Experts say that many women living with HIV/AIDS do NOT make a plan for their children because they don't like to think about the painful reality of death. Also, in the later stages of infection, HIV/AIDS-related dementia may frequently interfere with the parent's judgment or prevent officials from honoring a parent's wishes. However, for those who do use a Standby Guardianship, such a plan can bring solace because they will know their children will be safe and cared for after the parents' deaths.
It can also be difficult for adoption and foster care social workers to help an HIV+ mother deal with making a plan for her children after her death. It is sad and unpleasant and causes workers to think about their own futures and mortality. Also, social workers may have little training in this area. The need to link social workers with health professionals is one of the goals of programs to assist parents living with HIV/AIDS, such as the AIDS Orphan Adoption Project of the NATIONAL COUNCIL FOR ADOPTION (NCFA).
That project, begun in 1993 by NCFA, is directed by a professional with a background in health (an R.N.) and social work (an M.S.W.). One of the project's main goals has been to seek greater cooperation across disciplines-health, social work and family law-to ensure the best possible outcome for children and families impacted by the HIV/AIDS pandemic. Contact the AIDS Orphan Adoption Project at:
National Council For Adoption, Suite A
1930 Seventeenth St. NW
Washington, DC 20009
AIDS in Children from Other Countries
Some countries have very high rates of HIV. In Uganda, Vietnam and Thailand, HIV rates are among the highest worldwide. The World Health Organization has estimated that about half of all HIV-infected individuals live in Asia. With the exception of North America and Western Europe, HIV rates continue to increase. Many countries such as China and Russia have not yet begun to deal with the problem of HIV/AIDS on a broad public health basis.
Testing Children for HIV
A negative HIV test performed in another country is no assurance that a child does not have HIV. Instead, a child should be retested by a physician after arrival in the United States or other Western country where he or she is adopted. It is possible that in the future, simple saliva tests for HIV may be performed on children in foreign orphanages and shipped to reliable laboratories for analysis. Some companies already produce kits to self-collect blood specimens for later testing at a central laboratory. However, these may not be used with young children and there is a considerable delay in obtaining results.
Sexually Abused Children
If sexual abuse is known or suspected, a foster child should be evaluated for his or her risk for HIV infection. Not only is early treatment important, but also prospective adoptive parents should be given the opportunity to obtain adequate health insurance and to negotiate appropriate adoption SUBSIDIES.
When the Adopted Child Has HIV
Financial burdens in adopting a child who tests positive for HIV can be great, and parents need to know this fact prior to adopting the child. If medicaid and adoption subsidies are made available, some of the financial strain can be alleviated. Prospective adoptive parents must also be given the opportunity to investigate health care and educational and psychological supports available in their community. Pediatric HIV treatment remains a rare subspecialty; quality care is not universally available in the United States.
Testing Birthmothers for HIV
Many adoption agencies have no formal policy on when to test a birthmother for AIDS and most states don't allow a blanket policy. The best course is for the agency or social worker to investigate possible maternal risk factors and counsel the birthmother about her risks and need to be tested. If she refuses such testing, all this information should be provided to the adoptive family so that they can assess their own level for comfort.
Screening Adoptive Parents for AIDS
Screening of prospective adoptive parents for HIV/AIDS is not routine; however, some agencies do require such screening. If a prospective parent should test positive for HIV/AIDS, some agencies will place a child with them but only after assuring themselves of long-term care plans, the health of the spouse or partner and other factors. Since many people with HIV/AIDS can now live longer and more productive lives, attitudes about people who are HIV+ are gradually changing.
Organizations that Help Children with AIDS
Several organizations work to raise money for researching pediatric AIDS. The most prominent organization is the Elizabeth Glaser Pediatric AIDS Foundation, launched by a celebrity who discovered she had contracted HIV/AIDS through a blood transfusion and had unknowingly transmitted the virus to her child. Ms. Glaser died in 1994, but her work continues. Contact the Elizabeth Glaser Pediatric Foundation at: 2950 31st Street, Ste. 125, Santa Monica, CA 90405. Tel: (310) 314-1459.
An organization that concentrates on the health care of people who are HIV positive is the International Association of Physicians in AIDS Care, at 225 West Washington Street, Ste. 2200, Chicago, IL 60606. Tel: (312) 419-7074.
"Abuse History Influences HIV Risk for Adolescents," Brown University Child & Adolescent Behavior Letter 13, no. 11: 6.
Draimin, Barbara H., et al., "Improving Permanency Planning in Families with HIV Disease," Child Welfare 77, no. 1, n. 41 (January-February 1998): 180-194. Richard M. Grimes, Ph.D., et al., "Legal Considerations in Screening Pregnant Women for Human Immuno-deficiency Virus," American Journal of Obstetrics and Gynecology, 180, no. 2 (February 1999).
"IOM: Make Prenatal HIV Testing Part of Routine Care," AIDS Alert, 13, 12: 137.
"Pediatrics U.N. Agency Reports Youngsters Under Increasing HIV Threat," AIDS Weekly Plus, October?19, 1997.
Lyall, E.G. Hermione, et al., "Review of Uptake of Intervention to Reduce Mother to Child Transmission of HIV by Women Aware of Their HIV Status," British Medical Journal 316, no. 7127 (January?24, 1998), 268-271.
Sally Mason, "Custody Planning with HIV-Affected Families: Considerations for Child Welfare Workers," Child Welfare 77, no. 2 (March 1998): 161.
Susan Taylor-Brown, et al., "Parental Loss to HIV: Caring for Children as a Community Issue-The Rochester, New York Experience," Child Welfare 77 no. 2 (1998): 137.
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©2000 by Christine Adamec and William Pierce, Ph.D. Reprinted from The Encyclopedia of Adoption, 2nd Edition (2nd Edition) with permission of Facts On File, Inc.
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