To date, thousands of children living in the United States today — and millions of children around the world — got HIV from their mothers before, during, or shortly after birth. But thanks to aggressive treatments for pregnant women, the number of new cases of childhood AIDS in this country has declined. Children who already have HIV need extensive medical care, including medications to attack the virus and prevent complications. To protect children in the future, women with HIV need to work with their doctors to keep from spreading the virus to their babies.
In the last available statistics in the United States, an estimated 9,525 teens and adults are living with HIV that they were born with — a number that thankfully isn’t growing rapidly. In 2008, an estimated 182 children under age 13 were newly diagnosed with HIV infection, based on figures from 34 states and five U.S. protectorates.
How do children catch HIV?
Although a few children under 13 became infected with HIV through blood transfusions received prior to 1985 (when blood-supply screening began), almost all of them got the virus from their mothers. The virus can pass from mothers to children during pregnancy, childbirth, and breastfeeding. A pregnant woman who suspects she has HIV should be tested. Identifying and treating HIV in the mother during pregnancy is the best way to prevent it from passing to the baby. Without treatment, there’s a 1-in-4 chance that her baby will catch the virus. But if a woman gets the right medical care — including HIV medications — during and after pregnancy, those odds drop to 1 in 50.
Is childhood HIV infection also linked to sexual abuse?
In the United States, it’s rare for a child younger than 13 to catch HIV directly through sexual abuse. But according to a report from the Center for AIDS Prevention Studies at the University of California in San Francisco, survivors of childhood sexual abuse are more likely to later engage in risky behaviors, such as drug abuse, which increases the chances of HIV infection. The report also states that people who were abused as children “may feel powerless over their sexuality — as a result, they engage in more high-risk sexual behavior.” The report concludes that providing counseling and support for survivors of child abuse could help prevent future cases of HIV.
How is HIV diagnosed in children?
When a baby is born to a woman who has HIV, doctors will want to know as soon as possible if the baby is infected, too. The sooner the diagnosis is made, the sooner treatment can begin. But testing for HIV in a child younger than 18 months old can be tricky. The normal approach — checking for antibodies against HIV in the blood — isn’t completely reliable because a baby receives all of his mother’s antibodies at birth. So a baby could have antibodies to the virus without having the actual virus. But if he does have antibodies, he’ll need another test to determine whether he’s really infected.
Within the first few weeks of life, a baby with a positive antibody test should have a more definitive test that can detect the genetic material of the virus. These tests — called virologic assays — are extremely accurate. If the test is negative, the baby will be in the clear, as long as he doesn’t later pick up the virus through breastfeeding. If a child is over 18 months old and has a positive HIV antibody test, he or she probably has an HIV infection and will need to begin treatment promptly.
How is HIV treated in children?
Children with HIV need to take the same sort of medications used to fight the infection in adults. The drugs — called antiretrovirals — won’t completely eliminate the virus, but they can slow it down. Doctors have to make dosage adjustments when treating children, but the basic approach is the same. Like adults, children need to take every drug as prescribed to have the best chance of keeping the virus in check. And, like adults, children may have to take several drugs at the same time. The best option for many children may be a combination of powerful drugs, also known as highly active antiretroviral therapy, or HAART. A study that followed HIV-infected children and adolescents for an average of six years found that HAART cut the likelihood of death during the study period by about 75 percent.
Children with HIV also need extra treatment to prevent a condition known as pneumocystis jiroveci pneumonia (PCP). This illness is the leading cause of death among children with AIDS, so doctors take it very seriously. The main defense against PCP is a drug called TMP-SMX. Every baby born to a mother with HIV should start taking this medication when they’re four to six weeks old, even if they haven’t yet been diagnosed with the virus. If the baby turns out to not have HIV, the treatment can stop. Children with confirmed HIV need to take the drug until they’re at least a year old. After that, doctors will keep a close watch on the child’s immune system. If it seems to be getting weak, the child may need to start taking TMP-SMX again as a preventive measure.
To read the latest guidelines for the use of antiretrovirals to combat AIDS in children, please see the National Institute of Health at https://aidsinfo.nih.gov/guidelines/html/2/pediatric-arv-guidelines/0
How can children be protected from getting HIV?
By far, the single most important way to prevent HIV infection in children is to make sure that all pregnant women with HIV take antiretroviral medications, such as AZT, during pregnancy. Whether a woman has health problems from the HIV virus will determine if she needs to start AZT alone or in combination with other drugs, and at what point during her pregnancy she begins taking the medication. Because the virus seems to spread especially easily during vaginal delivery, doctors may recommend a cesarean section instead if the mother has high levels of HIV in her blood at the time of delivery. In this case, the baby also should not be breastfed.
What is life like for children with HIV?
Even with treatment, children infected with HIV face many challenges. They often develop more slowly, so may not walk or talk as soon as healthy children. As they get older, they may also need physical therapy and speech therapy to keep up with other children. Often, they also have to face the struggle of living in poverty, which may be complicated by having a mother who may be either have died or who is extremely ill. Nonetheless, many lead relatively healthy lives.
The adults in the child’s life face a huge responsibility to get him to the doctor at least several times a year for checkups. They also need to make sure that the child gets a healthy diet. Especially in the fight against HIV, nutrition means strength. Perhaps most importantly, adults need to make sure that the child takes his medicine as prescribed. Kids are never big fans of taking pills, so adults may have to do whatever it takes to get the medicine to go down. This might mean covering the pill in peanut butter (unless your child has nut allergies, of course) or offering a treat afterward.
At some point, adults also have to take the responsibility of telling the child about his illness. As recently reported in the Journal of Hospice and Palliative Nursing, pretending the child isn’t sick doesn’t seem to do any good and might be harmful. When he’s old enough to understand, the child needs to know that he’s facing a serious disease. It may help him appreciate the importance of taking medication, and make some of his symptoms feel a little less mysterious.
Many children with HIV can live almost normal childhoods, but they may have to deal with troubling symptoms along the way. Pain is a common and undertreated problem for kids with HIV. Caregivers and doctors alike should regularly ask children whether they’re in pain and take their answers seriously. In about 20 percent of children who get HIV from their mothers, the disease can progress rapidly and lead to serious illness before age 1, with many in this group dying by age 4. In the remaining 80 percent of infected children, the disease progresses more slowly, with some beginning to first experience AIDS symptoms as late as adolescence.
Early identification and modern medications, however, have helped prevent the frequency and intensity of symptoms that children with HIV face. Due to their more vulnerable immune systems, HIV-positive children also experience the usual childhood infections such as colds and flu more frequently and severely than uninfected children, and might even require hospitalization for such ailments. HIV medications can cause some side effects such as skin rashes, brittle bones, and high blood sugar.
The long-term future of children with HIV is uncertain. The current average life expectancy is about 10 years from the time of diagnosis, but new treatments mean things are improving all the time. With good care, HIV-infected children today have a good chance of living as long as anyone else who has the disease, and that can be decades.
Guidelines for the Use of Antiretroviral Agents in Pediatric AIDS Infections. National Institutes of Health. https://aidsinfo.nih.gov/guidelines/html/2/pediatric-arv-guidelines/0
National Institutes of Allergy and Infectious Disease. HIV infections in infants and children.
World Health Organization. Paediatric HIV and treatment of children living with HIV http://www.who.int/hiv/topics/paediatric/en/index.html
World Health Organization. Preferred antiretroviral medicines for treating and preventing HIV infection in younger children.
Read JS et al. Diagnosis of HIV-1 infection in children younger than 18 months in the United States. Pediatrics, 120(6): 1547-1562.
Centers for Disease Control and Prevention. Basic statistics: HIV/AIDS. March 2017.
American College of Obstetricians and Gynecologists. HIV and pregnancy. 2008.
Patel K et al. Long-term effectiveness of antiretroviral therapy on the survival of children and adolescents with HIV infection: a 10-year follow-up study. Clinical Infectious Diseases. 2008. 46(4): 507-515.
Centers for Disease Control and Prevention. Children under 13 years of age reported to be living with HIV infection (not AIDS) or with AIDS, as of December 2007 United States and Dependent Areas.
Allen D and ES Marshall. Children with HIV/AIDS: A vulnerable population with unique needs for palliative care. Journal of Hospice and Palliative Nursing
Center for AIDS Prevention Studies, University of California at San Francisco. How does childhood sexual abuse affect HIV prevention?
U.S. Department of Health and Human Services. (DHHS) HIV during pregnancy, labor and delivery, and after birth.
Centers for Disease Control and Prevention. You can prevent PCP in children.
Rivera DM, Frye RE. HIV Infection. eMedicine.
Allen D, Marshall ES. Children with HIV/AIDS: a vulnerable population with unique needs for palliative care. Journal of Hospice and Palliative Nursing.