The year is 2024, and circumstances have changed. Let’s talk about mothers living with HIV, and the choice to breastfeed.
Breast is best. Unless you are living with HIV, right? Not necessarily. In Canada, the recommendation is to formula-feed infants. A recommendation is not a rule. Many conversations are taking place in the HIV community about mothers living with HIV having the ability to breastfeed*. In a country where we have formula programs that provide free formula to mothers living with HIV, to ease the cost, it can be suggested that a mother should not even think twice about breastfeeding. However, the World Health Organization now suggests mothers living with HIV who are adherent to their ART medication can breastfeed. So, to breastfeed or not?
“It can be a very complicated conversation. For many years, we said. ‘If you’re HIV-positive, no breastfeeding.’ That was it. That was the conversation,” says Dr. Mark Yudin, physician in the Department of Obstetrics and Gynecology at St. Michael’s Hospital, Toronto. “We know now that U=U, and so we can say with very great conviction that sexual transmission rates are zero if you’re undetectable. What we can’t say with such conviction is that breastfeeding transmission rates are zero. If you look at the biggest studies that have been done, transmission rates were less than 1% in most of the studies, but they weren’t zero.”
We spoke to a mother living with HIV about her decision to breastfeed her two daughters. We were curious whether she had any fear or anxiety knowing that there was still a small risk of transmission of HIV. “The fear was always there. From delivery to the final bloodwork, I was crossing my fingers silently praying that I had made the right choice. As a new mom, you are already very exhausted, especially if you have other children and responsibilities. Remembering to eat, much less while taking medication, while also giving medication, can be an added stressor, and for me, I think that was my biggest concern. However, I was able to navigate this. It was in fact, the ‘right choice’ as both my babies are HIV-negative and very healthy. My advice to any HIV-positive woman who is pregnant or planning to have a baby is to seek support and education surrounding your choice, whichever it is. Do your research, ask all the questions, and make sure you have the answers you desire to confidently do this.”
Dr. Yudin and his team encourage discussion at the earlier stages of pregnancy to support mothers living with HIV with their parenting plan, whether that includes formula or breastfeeding. “Our job is to help make sure she understands all the implications of all the choices and help her make the best choice for herself and her baby,” he says. “We have conversations throughout the whole pregnancy. We have conversations in our clinic with the prenatal team. We also send every single person who comes to us for pregnancy to two pediatric appointments. By the time they get to labour, they know what they want to do. It’s not a last-minute decision. They’ve thought about it for weeks, for months. They have a whole team supporting whatever decision they choose to make.”
In support of harm reduction, the St. Michael’s team helps mothers through the decision to breastfeed or not. They are not discouraged, they are not coerced, they are guided in the healthiest way to proceed with breastfeeding their baby and not passing on the virus. If a mother living with HIV chooses to breastfeed, there are a few differences compared to those who don’t. These are more doctors’ appointments, more blood tests completed on both baby and mother, and the most shocking realization, the baby will be required to go on a HIV regime for a number of weeks.
We spoke with Dr. Douglas Campbell, the Chief of Pediatrics at St. Michael’s Hospital about caring for a child birthed from a mother living with HIV. “If women choose to use their breast milk and they’re in a safe situation going into that with low viral loads and are medication-compliant, we still recommend three antiretroviral therapies for the baby. This continues for up to one month after they stop using breast milk. So, you can imagine that it could be for one month if a woman chooses that long, or eight months, or longer. That bit of information often isn’t known to women, and is another really important factor in their decision. For some families, they choose to accept that plan. Others don’t want their baby to be exposed to three medicines for months and months.” Some parents are concerned about side effects, he says, but “every medication can have a side effect. Tylenol has a side effect.” Something that lingers in the community is the fear that a healthcare provider will involve child and family services, which Dr. Campbell strongly advises against. “There’s absolutely no need to inform child services. There are very few instances I can even think of why you would ever call child services on a mother—maybe because of mental health—but there’s never a circumstance, in HIV care, when that needs to be done.”
Unfortunately, there’s still stigma. While women living with HIV who breastfeed may experience stigma, Dr. Campbell shares that some women who don’t breastfeed also face stigma. “Some women have told us that they’re not treated the same way if they bottle-feed their baby. They’re looked down upon in their own community. This was big news to me. We need to understand what drives, you know, feeding choices, what realities women are in, rather than just pretending to say, ‘there’s one way that’s better for your baby and everything else doesn’t matter’. I don’t think that’s fair. I think that would actually put a lot of babies at a disadvantage if we did that.”
The concept of ‘poz’ mothers breastfeeding seems revolutionary. However, in society, we view mothers as being caretakers, who want the very best for children. We should not forget that this too applies to mothers living with HIV. Dr. Yudin emphasizes this point, explaining, “I think we need to remember that it’s actually the mom who cares the most about her baby. Yes—more than the doctors, more than the nurses. This is her child. She wants to love and protect this child. She’s the one who’s caring about this child. So, she’s not going to make decisions that are not in the best interest of her baby.”
*In this article we use the term breastfeeding, while understanding that terms “chest feed” and “breastfeed” can be used interchangeably.