Adopting a child with HIV infection or HIV exposure
Written by Laura Hoyt, MD on 22 Apr 2015
Not all children born to a mother with HIV infection become HIV infected them selves. With access for the mother and infant to the best possible HIV and obstetrical care, a baby can have a < 2% chance of being HIV infected. Unfortunately many HIV-infected women in the world do not have specific preventative therapy; the risk for their baby to become HIV infected can be 20-25%.1 If the baby is breast fed (which is the safest form of feeding in many places in the world) the risk of transmission is increased an additional 15-20%. There are additional factors that can increase the risk even further. The baby can only become HIV infected if the mother, not the father only, is HIV-infected. If a mother becomes newly HIV-infected during pregnancy or breastfeeding however, the risk for transmission increases further.
Often, the most important question for adoptive parents is whether the child has contracted HIV from the birthmother. Babies born to a mother with HIV infection can be tested for HIV infection themselves in 2 ways. The first way is to test the baby for HIV antibodies (Ab), just like older children and adults are tested. This method can not be used until after the baby is 18 months old. Before that age, the baby may still have the maternal HIV Ab in their system. These antibodies take a long time to disappear and do not necessarily indicate active infection and they are not harmful to the baby. The other way is to look for particles of the virus itself, using nucleic acid amplification tests (NAAT), which can be either an HIV RNA PCR (“the viral load test”), or an HIV DNA PCR. Either test is fine for this purpose. In the United States, we consider a baby to be HIV negative after birth when they have 2 negative HIV PCR test results after or > 28 days old, one of which is obtained when the baby is at least 4 months old.1,2 If the baby has been breast fed, the testing needs to be done at the same intervals after the last breast feeding. These HIV PCR tests are done in some other places around the world, but are quite expensive, so are not always done. Some international labs have very high quality testing, some do not. Most often the HIV PCR test results done overseas are accurate, but there have been some babies adopted by American families who were described as not infected, and then found to be infected by testing in the US. Thus it is wise to not fully trust the test results until they are done in an US (or other developed country) certified lab.
The prognosis for HIV infected children raised in places where they have good access to specialized pediatric HIV health care varies, but can be excellent. We don’t think about early death any more in these settings and encourage the children and their families to plan for the same life activities as any other child. Many HIV infected children attend college, marry, have children, and successful careers. HIV infected children have a chronic disease that requires taking antiretroviral (anti-HIV) medication on a daily basis.3 Fortunately HIV treatments for children have improved over the years, but pre-adolescent children still need to take medication twice daily, every day. Adherence to medication therapy is extremely important with HIV infection. They need frequent visits with a pediatric HIV specialist, 2 to 4 or more times per year, and blood testing is done at most visits. Some children may have more problems related to their HIV infection, particularly if they have not had antiretroviral therapy until later in life. Ideally all infected children are diagnosed early and started on antiretroviral therapy in the first months of life. Approximately 1/3 to ½ of HIV infected children who do not start therapy in the first year of life will either die, or have severe health complications. Children who survive, and start treatments later may have problems with infections, asthma-like conditions, learning and developmental challenges, or other problems. Some times these problems will improve partially or even completely after they start appropriate therapies.
There are special issues regarding HIV diagnosis disclosure to the child, and to others around them. These are done in a developmentally appropriate way with children, usually at least by the time the child is 10 or 11 years old. The stigma regarding HIV can still be quite difficult, and most families are very specific about who they decide they want to know of their child’s HIV infection. Because HIV is very difficult to transmit from one person to another in usual childhood activities (see more below), HIV status does not have to be disclosed to day care providers, schools or sports teams. Older teens appreciate being able to decide who they want to tell about their HIV infection themselves. The stigma about HIV still out there in the world, including in the US, can be challenging for families.
HIV is not a very sturdy virus outside of the human body. It is only transmitted through unprotected sexual intercourse, from a mother to her baby, or when significant amounts of blood exposure occur, such as in a blood transfusion, or when an HIV infected person shares needles to inject drugs. HIV is not transmitted in any household, school or sports setting outside of these very specific manners. It is not transmitted when a child bites another, even if skin is broken. It is not transmitted to a person who helps an infected person with a bloody nose, as long as they wash their hands in a reasonable time (5 or more minutes). The virus does not survive on any other surfaces, it dies very quickly with temperatures higher or lower than body temperature, exposure to air, to virtually any cleaning agent. It is not transmitted when beverages, food or silverware are shared. It is not transmitted in bath tubs or on toilets. Using gloves is not recommended for routine cares like changing diapers. Good hand washing (or alcohol rubs), as always, is the recommended precaution. It is advised that razors are not shared by some one with HIV infection, and that an HIV-infected person not “pre-chew” food and give it to a baby, but even in these situations, transmission is very rare.
As described above, an HIV+ woman’s risk of transmission of HIV to her baby can be as low as < 2%. In the best settings, the risk is even lower. Many HIV-infected women have children and are wonderful parents. We also now know that when an HIV-infected person is on antiretroviral therapy and has “suppressed” virus, their risk of transmitting the virus to sexual partners is also very low. The combination of suppressed virus and the consistent use of condoms is very effective in preventing transmission. There are many successful families where one of the adults is HIV infected and the other is not.
There is not a cure for HIV infection, yet. Most experts in the field of HIV infection do expect researchers to figure out a cure some day, but it may be years away. However, with therapy, HIV-infected children and adults can live a very manageable life, just like people with other chronic illnesses. If you are considering adopting a child who may be, or is HIV-infected, contact a pediatric HIV expert to ask the questions you have. Consider connecting with another family who has adopted an HIV-infected child to hear about their experiences.
- HIV: Risk of transmission from an HIV+ mother to child can be as low as <2%.
- Early recognition and treatment can result in better health and learning outcomes.
- Has a wide spectrum of symptoms, and there is currently no cure, but there are some very effective medications and treatments.
- The most up to date information about HIV infection and treatment can be found at www.aidsinfo.nih.gov
- Pickering L, Baker C, Kimberlin D, Long S. Red Book: 2012 Report of the committee on infectious diseases. Am Acad Pediatr. 2012;29:1-1058.
- Dunn DT, Brandt CD, Krivinet A, et al. The sensitivity of HIV-1 DNA polymerase chain reaction in the neonatal period and the relative contributions of intra-uterine and intra-partum transmission. AIDS. 1995;9(9):F7.
- Palella FJ, Deloria-Knoll M, Chmiel JS, et al. Survival benefit of initiating antiretroviral therapy in HIV-infected persons in different CD4 cell strata. Ann Intern Med. 2003;138(8):620.
This article was generously shared by Dr. Judith Eckerle of the University of Minnesota Adoption Medicine Clinic, and will be included in an upcoming book being published for Pre-Adoptive Parents