Chestfeeding, Breastfeeding and HIV: What You Need to Know

by Ann K. Avery, MD

By: Ann K. Avery, MD, Infectious Disease Physician at MetroHealth Medical Center

Welcome to some of the best news we’ve heard so far in 2023: If you’re living with HIV and want to have a baby, United States guidelines now say that you can safely consider breast/chest feeding after giving birth!! 🎉

That’s right, the U.S. Department of Health and Human Services (HSS) recently posted updated guidelines, which now incorporate chest/breastfeeding options for people living with HIV.

This is all a massive shift from previous guidelines and might even be surprising to you. So, if you are confused or even worried about if it’s safe to chest/breast feed when you’re living with HIV, or want to know more about what this means for you, read on! ⬇️

Why is this such a big deal?

Choosing how to feed your baby is an important decision. Having the option now available for chest/breast feeding while living with HIV if you’ve had sustained viral suppression is important. That’s because nursing your baby:

  • Provides a fantastic source of nutrition: A parent’s milk changes over time to meet a baby’s
  • Increases flexibility (& saves money!) for parents: Being able to feed a child anywhere, anyplace, is not only more cost effective, but it can also reduce stress. Plus, skin-to-skin contact provides strong bonding and is a source of comfort to babies.
  • Protects against some short- and long-term illnesses and diseases: Did you know that chestfed or breastfed babies have a lower risk of asthma, obesity, type 1 diabetes, and sudden infant death syndrome? They’re also less likely to get ear infections and stomach bugs!
  • Improves the parent’s health: Chest/breast feeding actually reduces the parent’s risk of breast and ovarian cancer, type 2 diabetes, and high blood pressure.

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So, what changed about chest/breast feeding and HIV?

Previously, the HHS guidelines said that parents shouldn’t breast/chest feed their children if they are living with HIV. This was because human milk-- just like blood, semen, vaginal fluids, and rectal fluids-- can transmit HIV.

Recently, the HHS has found that the risk of transmission to children is very low, if the child-bearing person living with HIV has had sustained viral suppression. Take a look at the numbers below! Risk of transmission in virally suppressed, lactating parents is:

  • 0%, with the use of formula feeding.
  • Less than 1% for those living with HIV if their viral load is undetectable.

An important note of caution – less than 1% risk is great, however HIV transmission via chestmilk/breastmilk has occurred despite viral suppression.

HHS guidelines, like this one, are based in solid evidence, and are the recommendations that doctors follow to provide safe and effective care. 👩🏾‍⚕️‍⚕️ This means that if you are on antiretroviral therapy (ART) and have reached long-term viral suppression, all signs point to breast/chest feeding as an option for you. Hooray!

Something to keep in mind is that while these guidelines have been updated, there is still a potential for misunderstandings and even discrimination around chest or breastfeeding and HIV. It’ll take a little while for everyone - like Child Protective Services (CPS) - to catch up to this decision. If you feel like this might become an issue for you, you might want to reach out to a lawyer or advocacy group to ensure you’re being treated fairly. You have science and the law on your side, so you deserve to feel protected and safe! BEEEBAH (Building Equity, Ethics, and Education on Breastfeeding and HIV) | The Well Project

What does all this news about breastfeeding and HIV mean for you?

There isn’t one all-around answer, but not to fear… your HIV physician and OB/GYN care team are both here to help! 🩺 ⚕️ 🩺 Be sure to discuss infant feeding options with them during an upcoming appointment. They’ll take a look at your recent viral load results and past medical history and give you a chance to ask questions. Together, you and the medical staff can decide if chest/breast feeding is the best option for you and your baby.

The big takeaway here is that medical management can significantly reduce the risk of parent-to-child transmission of HIV. Luckily, there is a lot more information out there that we’ve written about over the years. Here are some answers to common concerns:

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How can you best manage your health while breast/chest feeding?

If you are given the a-okay to begin breast/chest feeding, then congratulations! Here’s what you should know to ensure your child stays healthy:

  • Stay consistent with your medication: Maintaining an undetectable viral load by taking your meds 💊 is super important to reducing the risk of transmitting HIV to your baby.
  • Monitor your viral load: Knowing is half the battle! 🧐 💡 Regular lab tests will keep a close eye on the HIV and make sure you’re still undetectable. If you are nursing a baby, your viral load will be checked much more often than usual.
  • Practice safe feeding techniques: You should avoid cracked or bleeding nipples, as well as ensuring proper latch and positioning. Exclusively breast/chest feed (this means NO switching back and forth between human milk and formula) for the first 6 months, then introduce solid foods while still breast/chest feeding until at least 12 months of age.
  • Before weaning off milk, check with your medical team for an ‘all clear.’ ✅
  • Take care of you: It's easy to forget about our own health when raising children. Our well-being can have a massive impact on our kids. Try to eat healthy (you need 500 calories a day just to nurse your baby!), drink lots of water, regularly exercise, and sleep whenever you can. 😴 Avoiding smoking and alcohol can also have a huge positive impact.

The list above applies to anyone living with HIV who is breast/chest feeding, regardless of their gender identity.

It’s also SUPER important to mention things that gender nonconforming people living with HIV experience, when it comes to breast/chest feeding.

Many gender noncomforming individuals experience gender dysphoria, which is the emotional pain felt when one’s gender identity doesn’t match their sex at birth. Tools used to treat dysphoria include hormone therapy, top surgery, and chest binding. These treatments change one’s physical body, so it matches their gender identity, and helps them feel better!

However, pregnancy and breast/chest feeding can make dysphoria worse. Hormone therapy must be stopped to allow the fetus to develop. Stopping hormones causes physical and mental changes, sometimes triggering gender dysphoria. 😞

Some treatments for dysphoria, like top surgery and binding, make it difficult for people to produce milk. Since people with HIV who are breast/chest feeding cannot supplement their natural milk with formula, breast/chest feeding isn’t an option if they aren’t making enough milk for their baby.

So, gender nonconforming people who are living with HIV and planning on breast/chest feeding have it extra hard and will need support from a medical team with experience nurturing the health of pregnant and lactating gender nonconforming people as well as a strong HIV treatment team.

Speaking of support…

When it comes to breast/chest feeding and living with HIV, having a strong support network can be a huge help! Having people to talk to who have gone through similar experiences is fantastic for one’s mental health. Of course, always seek guidance and support from your health care team, but also reach out to support groups if you’d like help.

There’s also the Positive Peers app, where you can speak to other pregnant people living with HIV who might also be considering breast/chest feeding. You can get advice in the Positive Peers community forum, so if you’re struggling in any way, a support network is here waiting for you. 🤗