Understanding Congenital Human Immunodeficiency Virus (HIV)

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:

• Congenitally (also called perinatal or vertical transmission)
• Via sexual contact
• By sharing intravenous drug paraphernalia, like needles

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%.[1]

The best way to protect your infant from HIV transmission is by planning ahead. If a person is HIV-positive but is on antiretroviral therapy (ART) and their viral load is suppressed to undetectable levels, there is an incredibly low — nearly zero — chance of transmitting HIV to a sexual partner or to offspring. In fact, CDC guidelines indicate that if the partner with HIV is on ART and has an undetectable viral load, there is no associated risk of sexual transmission during unprotected sex [1]. Viral load is monitored over time as part of ongoing health and treatment management.

HIV Management and Counseling Before Conceiving

For couples trying to conceive via intercourse where one partner is HIV-positive and their viral load remains detectable, the HIV-negative partner can take pre-exposure prophylaxis (PrEP). Unprotected sex can be limited to peak fertility periods in each cycle. Both steps are intended to reduce the risk of HIV transmission [1].

Other options include intrauterine insemination or in vitro fertilization. Speak with a healthcare provider who can counsel you on the best path forward for conceiving.

Preventing HIV Transmission While Pregnant

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 appropriate treatment and preventive care. The use of ART helps prevent perinatal transmission of HIV and also inhibits sexual transmission of the virus [1].

Those who become pregnant while 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.[2]

Speak with your healthcare provider for more information and guidance.

• Myth: All infants born to people with HIV will have HIV.

With proper care and preventive measures, the risk of transmission can be significantly reduced.

• Myth: Breastfeeding is always unsafe for mothers with HIV.

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.

• Myth: Congenital HIV is a death sentence.

With early diagnosis and appropriate medical care, many children born with HIV can lead healthy and fulfilling lives.

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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