As a child, I dreamed that one day I would become a mother. What I never envisioned was testing positive for HIV. As I entered my last year of college in the deep, rural south, I worried about what the diagnosis would mean for me and my future children. From that point forward, my HIV diagnosis impacted every decision that I would make, including when and how I would conceive those children. Through this journey I have had to learn to trust others to guide me through the unknown, all while maintaining a sense of autonomy about my own life. One of the biggest challenges of walking that tightrope has been advocating for my choice to breastfeed while living with HIV in the US.
I have witnessed breastfeeding experiences of women and their children from all over the world through both my personal experiences and the work I do as senior manager of community programs for The Well Project, a nonprofit whose mission is to change the course of the HIV/AIDS pandemic through a unique and comprehensive focus on women and girls across the gender spectrum. It baffled me that my sisters living with HIV in Kenya were supported to breastfeed while I was being told it would never be an option for me.
In 2020, I met a woman living with HIV in the US who had successfully breastfed one child and was currently feeding her second with the support of her medical providers. While I had no plans at the time to expand my family beyond the one child that I already had, this encounter with a peer changed my perspective and gave me a glimmer of hope that I too would be able to breastfeed one day. I wanted access to that freedom of choice for my family and myself but wondered if our options were different because she is white and I am Black.
A key differentiator was that when I had my first child in 2010, US guidance admonished parents living with HIV not to breastfeed. What I didn’t learn until later was that the guidance also recommended that parents living with HIV be supported in their infant-feeding choices. Like many others, my providers at the time disregarded that guidance, likely in part because of stigma and bias. Apparently they felt that my HIV status outweighed all of the many benefits of breastfeeding to mother and newborn including the bonding experiences and decreased risk of illnesses. Without ever having a conversation about it, the answer was no.
Tensions around patient-centered care and discrimination against parents living with HIV was made very real to me when I became pregnant with my second child in 2021. After expressing interest to a medical provider I had trusted for almost a decade with my care led to a threat to involve Child Protective Services (CPS), I felt very hurt and confused. Unsure what the future held for me and my 6 week-old fetus, I knew I had to protect us. Fortunately, I live in a city where there are options for HIV and OB/GYN care and I was able to connect with a provider who supported my right to make my own best decisions, including to breastfeed my daughter.
Starting the discussions early on in my pregnancy allowed me to advocate for the care that I wished to receive from my medical team, which included an OB/GYN, nurse, social worker, and pediatrician – all of whom were all aware that I planned to breastfeed. It was clear that they were not there to tell me what to do, but instead to inform me of my choices and potential risks and then ultimately support my decisions. This care and treatment empowered me to confidently breastfeed my baby girl for 7 months and not transmit HIV to her during the process.
My experience with the provider who threatened to call CPS aligns with findings from The Well Project’s 2022 online survey that gauged knowledge and attitudes of breast/chestfeeding and HIV. The survey was completed by 212 respondents, half of whom (n = 106) identified as healthcare providers. The results confirmed that breastfeeding and HIV in the US is still a complex and nuanced area of care for women living with HIV. While 79% of providers agreed that “breast/chestfeeding offers health benefits to mother and baby regardless of HIV status (n = 81),” write-in comments suggest that providers aren’t acting on that belief, including one that noted “…No sufficient research in high resource countries to support breastfeeding.”
These results highlight that while providers say they supporting bodily autonomy among women and other parents, they also harbor significant reservations about breast/chestfeeding. Despite expressing support for women’s decision-making and autonomy (81%), 21% of providers said they never “initiate discussions around breast/chestfeeding (n = 20).” Their comments indicate that while they rely on US breast/chestfeeding guidelines, they don’t recognize the recommendation to support parents’ decisions: “My conversations are in line with current guidelines discouraging breastfeeding, so we are talking about formula and making sure they have adequate supply and talking about continuation of ARV following delivery.”
This inconsistency between providers’ self-described attitudes and actual actions (which are often influenced by stigma and bias), can have a grave impact on the care that people like me experience during conception, pregnancy, and postpartum.
In a historic shift, in January 2023 the US Department of Health and Human Services unveiled updated Perinatal HIV Clinical Guidelines, which for the first time emphasized shared decision-making between providers and patients, provided explicit instructions that CPS not be engaged in response to a parent’s desire to breast/chestfeed while living with HIV, and advised providers to support parents’ rights to choose the best feeding option for them and their family. In my opinion, the most impactful update is that the guidelines no longer begin with the recommendation that parents living with HIV do not breast/chestfeed.
These updates are necessary and welcome, representing a significant step toward aligning the US with many other parts of the world that support breast/chestfeeding for parents living with HIV. This support helps challenge the isolation and stigma faced by individuals living with HIV during an extremely vulnerable time of their lives.
I am hopeful that the updated guidelines will assure healthcare providers of the extremely low risk of HIV transmission through breast/chestfeeding when the parent is undetectable, I also know that education and training for the communities most impacted by HIV and the providers who care for them will be crucial to ensuring their effective implementation. Parents living with HIV must be equipped with information and resources to enable them to make the best decision for themselves and their families and healthcare providers must use updated, evidence-based recommendations to support parents on their journeys.
Shared, informed decision-making is the collaborative effort between all involved parties – not telling someone what they should or should not be doing. When caring for people living with HIV, providers must take the time to listen and understand the individual’s unique needs and desires. As a parent living with HIV, I am grateful for these updated recommendations and the support they aspire to provide to parents living with HIV and our little ones. Let us continue to advocate for comprehensive support systems that empower parents to make their own best choices.
Disclosure statement
No potential conflict of interest was reported by the author.