The difference between HIV positive and AIDS is an important one that is often confused by the layman. AIDS is now considered, in theory, to be a manageable chronic illness, and given the correct management, babies who are infected by HIV can lead normal lives.

An Introduction to AIDS
AIDS stands for acquired immunodeficiency syndrome. AIDS was first identified in children in 1982, one year after its appearance in adults. Clinical manifestations of HIV infection range from asymptomatic infection to debilitating disease and death.

"AIDS is caused by infection with human immunodeficiency virus – HIV," says Dr. Leighton McDonald, executive manager of Qualsa Healthcare and member of the Board of Governors of the South Africa Business Coalition on HIV/AIDS (SABCOHA). "The virus infects the body's immune system and slowly destroys the body's ability to mount an immune response to infections. This results in the patient being susceptible to infections that would usually not cause any problems – these infections are called opportunistic infections for this reason. These infections include various types of tuberculosis, pneumonia, meningitis and oral/oesophageal thrush. Since the immune system is involved, babies with AIDS also have a higher incidence of minor childhood infections – coughs, colds, diarrhea, etc."

Passing It On
Perinatal transmission is the most common mode of acquisition among children in the United States. Children most commonly acquire HIV infection through maternal-infant transmission; however, not all infants born to HIV-infected women contract HIV infection.

"Estimated perinatal transmission among untreated HIV-infected women to their infants ranges from 13 to 30 percent," says Dr. Saroj Bakshi, the division chief of pediatric infectious diseases at Bronx-Lebanon Hospital Center in Bronx, NY. "This mode of transmission can occur by three mechanisms: transplacental infection in the uterus, intra-partum infection during labor and delivery and/or postpartum infection through breast milk. HIV infection through sexual contact occurs in babies and small children who are sexually abused and molested."

Now You See It
Perinatal HIV infection occurs during the development and maturation of the immune system, distinguishing pediatric HIV infection from adult infection. This has profound effects on the clinical course, nature and timing of opportunistic infections and immune responses to immunizations. "Growth failure is common in HIV-infected children early in the course of disease," says Dr. Bakshi. "In some children, failure-to-thrive is seen. Delayed acquisition of developmental milestones or loss of previously acquired milestones is also a common manifestation of HIV infection in children. In some cases, neurocognitive developmental deficits accompany the HIV infection."

A Team Effort
The pediatrician plays a crucial role in the comprehensive care of HIV-infected children and their families. As the primary care provider, the pediatrician is responsible for:

• Diagnosing the HIV infection.
• Providing well child care and monitoring growth and development.
• Administering immunizations.
• Coordinating specialized care with specialists and other services such as specialists in antiretroviral therapy, developmental and psychological assessment, nutritional support and dental care.
• Managing concurrent common medical problems and directing the family to social, financial and appropriate legal services.

However, proper and adequate care of HIV-infected children requires teamwork. A strong level of communication between parents, health professionals, specialists and pharmacists is a must. "A baby or small child infected with or suffering from AIDS will have their own team of people to help," says Dr. Bakshi. "Other than their pediatrician, treatment may involve experts in the field of pediatrics, nutritionists, physical therapists, pharmacists, behavioral health specialists – child psychiatrists and psychologists – social workers and community outreach workers. It takes a lot of work and organization to keep the lines of communication open, but in order for the baby/child to receive the best care and the best treatment, it is something that needs to be focused on very highly as the process of routine immunizations can occasionally pose problems due to already compromised immune functioning in the child."

All in the Family
Disclosure of the condition to other family members at the opportune time is a very important issue. For many parents and families, it is an issue that may pose a need for additional professional counseling.

"Appropriate disclosure must be tailored to the family," says Dr. Bakshi. "Assuring that the family has knowledge, education, instruction and guidance is helpful in alleviating parental guilt and allows for discussion [among] the child, caregivers and health care professionals. Uninfected siblings need extra attention to help with their own dilemmas and conflicts. Terminal care for the dying child is extremely crucial to help the entire family grieve and to come to terms with their own sense of loss."

What's Available?
According to Dr. McDonald, the first step in properly treating the condition of AIDS is to stress that it is a totally preventable condition. If for any reason the expectant mother is at risk of HIV infection, she should be tested for HIV early, so that the appropriate measures can be taken to minimize the risk to her family and the fetus in any future pregnancies.

Once a baby is born, he/she needs to be tested for HIV at birth, then at 3, 6 and 12 months to see if infection has taken place. If infection is determined, the first steps in complete treatment include:

• Counseling for parents, siblings and other caregivers
• Nutrition counseling and education
• Hygiene
• Antiretroviral therapy
• Prophylactic therapy for opportunistic infections

"Once therapy is instituted, the illness needs to be closely monitored to ensure that therapy is working," says Dr. McDonald. "The monitoring includes regular tests for viral load estimation (to measure how much virus is in the blood) and CD 4 + Count (to measure the status of the immune system). These tests will help determine how the baby/child is reacting or responding to treatment and determine what changes need to be made."

Reaching Out
Parents of AIDS-infected babies/children need a lot of physical, psychological and social support. Parents need to learn tools to help cope with fears of their own premature death, abandonment and fear of losing their children to various infections. "Parents may experience associated guilt feelings for having infected their kids with resultant self-punitive behaviors complicating an already fragile way of coping," says Dr. Bakshi. "Many inner-city urban families also have other psychosocial problems to deal with due to their dependency on drugs, being homeless and dysfunctional family dynamics to cope with. Many hospitals and social agencies are well equipped to handle all these complex biopsychosocial issues in caring for patients and their families."

According to Dr. McDonald, there are many places for parents to begin their search for support including:

• The National Pediatric & Family HIV Resource Center
• Pediatric AIDS Foundation
• Johns Hopkins AIDS Education
• The Food and Drug Administration

"No matter how close a family is or how much they love each other, they should not try to 'deal with' something of this magnitude alone," says Dr. McDonald. "But with proper education, treatment options and counseling, babies infected with AIDS can easily and happily enjoy their early days – and their family can enjoy them."

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