I don't know what came over me. Here I am, an unsure, brand new mom living with HIV, holding my newly born baby in my arms, and something kept telling me, "Just do it. Just tell them." The nurse asked me if I needed anything else before she left. Here's my chance. "The risk of HIV transmission from mother to child through breastfeeding when mother is undetectable is less than one percent. I'd like to breastfeed my baby and I'd like for you to speak with my infectious disease doctor for more information." It worked. They listened. They gave me support. My baby and I shared fourteen beautiful months of breastfeeding. These moments were some of the most tender moments I have ever experienced in this life–moments of true peace. I appreciated the stillness and the thoughtfulness. I thought, this is the closest my baby can be to me outside of my body, and here I feel a purpose wash over me that deems me completely and wholly a mother. My baby and me. My body and mind that had been tainted with the diagnosis of HIV was all that was keeping my baby alive and thriving–my milk, my liquid gold. I wasn't toxic.
This isn't the narrative for most. My second question after being diagnosed with HIV following "Am I going to die?" was "Will I be able to have children?" I'd always imagined myself becoming a mother, a breastfeeding mother more specifically. I'd heard on so many occasions how "breast is best" and how a mother's body customizes the baby's milk to specifically meet their individual needs. I wanted this for my baby and when diagnosed with HIV, this dream died for me. I never asked my doctor about breastfeeding because I never thought it to be an option for myself. Formula is the safe option, I thought. I wasn't in a position to question this. I felt lucky to be pregnant and to have the chance to become a mother.
It wasn't until my infectious disease doctor educated me about the PROMISE studies that I began to consider that breastfeeding may be a potential option for me. Breastfeeding did not come without its challenges. While in the hospital, I did not receive lactation support, so I did not know how to help my baby latch. Although I knew the statistics, I was still very afraid of transmitting HIV to my baby, so I opted to flash heat my newly pumped milk before feeding it to my baby. This meant that every meal for my child must be expressed, heated, then cooled, then fed to my child. This led to many moments drowning in the overwhelming sound of my screaming, hungry baby. I was desperate to meet her needs and found myself falling short.
I didn't know how to use a breast pump. I initially thought that turning the pump on a higher setting meant a higher output of milk, so I bit my lip while I endured the pain of the pump pulling on my breast as I continued to produce less and less milk. I ended up with a serious infection on my nipples. I remember holding my baby while sitting on the bathroom floor topless, bawling. I felt so hopeless. I found the number to a breastfeeding support line and called. I explained my situation, disclosed my status, and was told by the lactation consultant that she'd just arrived home from a training convention in which all the certified lactation professionals were instructed to report any mothers who disclose a positive HIV status while breastfeeding directly to CPS. I stopped breathing. Not only did I have to worry about how I was going to feed my baby her next meal, now I had to worry about having my baby taken away from me for feeding her with my body, even with the support of medical professionals.
I never want a mother to be in this position. I want mothers living with HIV to have all the support they need from providers, family, and friends to feed their children in a way that best suits their lives. I never want a mother to fear losing her child over choosing what she believes to be the best thing for her child and family. As a mother living with HIV who has experienced breastfeeding my children (both of them HIV-negative and thriving), I want to be a part of creating intentional spaces where mothers and birthing parents-to-be can come to ask any questions they have about breast/chestfeeding their children and be met with a mutual understanding and support.
I am so pleased to share that I have finally become a part of creating and upholding this intentional space. In the beginning of April 2023, The Well Project launched the BEEEBAH Resource Group on Facebook with the intention to welcome in and guide any mothers/birthing parents with an interest in learning more about breast/chestfeeding while living with HIV. The group is equipped with an influx of up-to-date resources from The Well Project, live one-on-one guidance, and is run by mothers living with HIV who have experience breastfeeding their children. This space creates hope for so many mothers/birthing parents living with HIV who would otherwise be facing the decision to breast/chestfeed alone. No one deserves to be alone when making that decision.
If you are a mother/birthing parent living with HIV or an ally to the movement and would like to learn more about breast/chestfeeding while living with HIV by joining the BEEEBAH Resource Group, please email BEEEBAH@thewellproject.org for an invite. You don't have to do this alone. We are here ready and willing to travel this journey alongside you. Don't be afraid to take the leap. You will be so happy you did.
"All I wanted to do was feed my baby. I was not seeking approval, I just needed support." Ciarra "Ci Ci" Covin, a breastfeeding mother living with HIV