Written on November 30, 2023 by Gillian (Gigi) Singer, MPH. To give you technically accurate, evidence-based information, content published on the Everlywell blog is reviewed by credentialed professionals with expertise in medical and bioscience fields.
Table of contents
Congenital human immunodeficiency virus (HIV) is a subject that often comes with a shroud of misinformation and stigma. This article aims to shed light on the realities of congenital HIV, dispel myths, and empower readers with accurate information. By understanding the facts and not perpetuating harmful myths, we can create a more compassionate and informed society.
The word "congenital" means that something is present from birth — that is how someone is born. This can refer to a person’s traits or behaviors but also applies to illnesses or conditions present at the time of an infant’s birth.
With that in mind, congenital HIV is the presence of human immunodeficiency virus (HIV) in an infant at birth. This occurs when a pregnant person is HIV-positive and transmits the virus to their infant in utero, during labor, or during breastfeeding.
This mode of transmission is obviously very different from what is most commonly thought of as the primary mode of transmission of HIV — sexual contact. In reality, HIV can be spread in multiple ways:
There are two types of HIV: HIV-1 and HIV-2. The type you have affects the likelihood of transmission to your infant. The transmission rate of HIV from pregnant person to child is 20% to 25% for HIV-1; for HIV-2, the transmission rate is about 5%.
The best way to protect your infant from transmission of HIV is by planning ahead. If a person is HIV-positive but is on antiretroviral therapy (ART) and their viral load (the amount of the virus in a person) is suppressed to the point where the virus is undetectable in the body, there’s an incredibly low, nearly zero, chance of transmitting HIV to a sexual partner or to offspring. In fact, the CDC guidelines indicate that if the partner with HIV is on ART and has an undetectable viral load, there's no associated risk of sexual transmission of HIV during unprotected sex. Viral load is tested over a period of time as a part of monitoring your health and treatment.
For couples who are trying to conceive via intercourse, where one partner is HIV-positive, and their viral load remains detectable, the partner without HIV can take pre-exposure prophylaxis [PrEP]. Unprotected sex can be limited to peak fertility period in each cycle. Both of these steps are done to limit the transmission of HIV.
There are other options as well, such as intrauterine insemination or in vitro fertilization. Speak with a healthcare provider, and who can counsel you on your path to conceiving.
If you are pregnant and may be at risk of HIV, you should be tested as soon as possible so that you and your baby can receive proper treatment and preventative care. The use of ART prevents the perinatal transmission of HIV and also inhibits the sexual (secondary) transmission of the virus.
Those who become pregnant and are already on ART and have achieved viral suppression should continue their ART regimen and consult their healthcare provider.
According to the National Institutes of Health, all newborns with perinatal exposure to HIV should receive antiretroviral (ARV) drugs during the neonatal period to help reduce the risk of HIV transmission, with selection of the appropriate ARV regimen guided by the level of transmission risk.
Speak with your healthcare provider for more information and guidance.
With proper care and preventive measures, the risk of transmission can be significantly reduced.
While breastfeeding can transmit the virus, with proper medical guidance and treatment, the risk can be minimized. In some cases, formula feeding may be recommended.
With early diagnosis and appropriate medical care, many children born with HIV can lead healthy and fulfilling lives.
Gillian (Gigi) Singer, MPH is an American Board of Sexology Certified Sexologist, a trained Sexuality Educator, a Sex Ed Content Specialist and the owner of The Gigi Spot LLC. She is passionate about providing comprehensive, evidence-informed, medically accurate, and non-judgmental education to everyone in ways that are approachable