Make All Breastfeeding Great Again
Reframing Infant Feeding for Women Living with HIV
by Claire Gasamagera
In the United States where there is access to clean water and affordable replacement feeding, both the CDC and the American Pediatrics Association recommend complete avoidance of breastfeeding as the best and safest infant feeding option for mothers living with HIV, regardless of maternal viral load and antiretroviral therapy. Instead of breastfeeding, the CDC recommends that parents and caregivers use infant formula.
According to the CDC, HIV transmission from mother to child is 1% or less. Clinical trials have shown that maternal antiretroviral treatment during pregnancy and breastfeeding can reduce transmission to 1%.
However, CDC and healthcare providers need to rethink infant feeding guidelines for women living with HIV in the United States.
The guidelines we have are not culturally sensitive, do not account for stressful events, and make women living with HIV vulnerable to HIV stigma and discrimination.
My Make All Breastfeeding Great Again proposal shifts Trump’s Make America Great Again priorities and attention to breastfeeding for women living with HIV. My MAGA is not carelessly proposing that women living with HIV put infants at risk of HIV but rather proposing to empower women living with HIV to protect infants from HIV.
To illustrate why we need updated guidelines on breastfeeding for women living with HIV in United States, one third of ninety-three healthcare providers surveyed revealed they were aware that some of the women living with HIV in their care, against all their advice, breastfeed.
In addition, my experience illustrates how the current guidelines to me were both stressful and culturally insensitive.
Truly, in my African cultural heritage breastfeeding is celebrated by the entire community. During ikiriri, a period that lasts at least a month, the wood fire does not go out. In today’s times the wood fire is symbolic and placed outside the house because we no longer have wood fire inside our modern houses. The purpose of the fire is to warm up mom and baby. At the same time sisters and mothers-in-law, aunts, cousins, neighbors and friends alternate in cooking, chatting, singing and dancing 24/7. Men keep the fire ignited, do heavy lifting, and sit in the backyard to chat and play igisoro while drinking banana wine. The father brags about the baby’s strength, claiming the baby resembles him. The goal of that warm care is to help a woman heal from delivering a baby, feel comfortable, and lactate. I saw my stepmother treated this way; my youngest sister was born when I was twelve. As a little girl, I started imagining with impatience my own ikiriri.
In contrast, when my time came to become a mother, I was an immigrant in United States: my experience was stressful, lonely, and cold.
By the time my baby was discharged from the neonatal intensive care unit, it was wintertime in Detroit, Michigan. My baby had spent the first few weeks of his life in the NICU for mild respiratory issues. This was my first baby, a miracle baby as I was a thirty-four-year-old black immigrant woman born with HIV. In the NICU nurses do everything from giving medicine and feeding to changing baby diapers. I was allowed to be there for a limited time as a visitor. The scariest moment came when the nurses gave me my seven pound baby and a bag of 4oz bottles of cold formula to go home with. I was wondering, “How will I keep this tiny baby alive without breastfeeding?” In the mighty cold of Detroit winter, I would be crying along with the baby while feeding him the 4oz bottle of cold formula and then milk away my hurting and swollen breasts in the shower.
Of course, the warm weather came back to Detroit and I survived that stressful experience. I even got a surprise reinforcement as I had another baby in fifteen months. With the second baby things got easier as I was an expert and I had access to more resources. My experience represents a drop in the ocean when it comes to women living with HIV with infants’ difficult experiences.
Many women do not breastfeed in isolation or only in the presence of a spouse or partner. Ordering women living with HIV to not breastfeed makes them vulnerable to HIV-related stigma and discrimination as they have to explain to family members and friends why they cannot breastfeed.
In the spirit of promoting the agency of women living with HIV, The Well Project convened mothers living with HIV with infants and pro-breastfeeding medical experts and we developed the “Expert Consensus Statement on Breastfeeding and HIV in the United States and Canada.”
Our Consensus calls on healthcare providers to support women living with HIV to make informed infant feeding choices by providing them with information and services focused on HIV transmission risks reduction.
Thus we are inviting organizations and individual to consult the Well Project website’s informational materials on infant feeding options for women living with HIV, endorse the “Expert Consensus Statement on Breastfeeding and HIV in the United States and Canada,” and support the International Community of Women Living with HIV–North America virtual support group on Breastfeeding.
Indeed, Making All Breastfeeding Great Again by updating infant feeding guidelines for women living with HIV empowers women living with HIV who may be breastfeeding in the closet to reduce the risk of transmitting HIV to their infants.
Making All Breastfeeding Great Again with updated guidelines will empower women to make informed decisions on infant feeding and to feel fully supported and trusted.
Make All Breastfeeding Great Again will give healthcare providers comprehensive and culturally sensitive guidelines to better support women living with HIV. In addition, updated guidelines on infant feeding will create a friendlier environment for women in healthcare sites. We need healthcare providers to resist lecturing us on the harm of breastfeeding and instead listen to us and trust us and assist us in making plans for infant feeding choices.
I am calling on the CDC and healthcare providers to update infant feeding guidelines to accommodate the needs of women living with HIV and reduce the risk of HIV transmission.
Let us Make All Breastfeeding Great Again.
To read the “Expert Consensus Statement on Breastfeeding and HIV in the United States and Canada,” visit: https://bit.ly/3fmAYro.
Tuyishime Claire Gasamagera is an author, storyteller, activist, advocate, and a multilingual journalist reporting on social and racial justice, equal human rights and access to healthcare. Claire is a contributor to different HIV /AIDS magazines.