What No One Will Tell You About Breastfeeding

While pregnant with my first child, I wondered if my disability would interfere with my ability to breastfeed. I am an amputee with only one arm, so I wouldn’t be able to use another hand to position the breast or to help the baby latch. The first lactation consultant did not know what to do with me and became flustered when the traditional positions didn’t work. Another lactation consultant recommended laid-back breastfeeding, where I reclined, relaxing my back and neck, tilting my pelvis forward, and allowing gravity to hold my baby to me, freeing my hand. I breastfed my first for nearly a year and used a breast pump at work. When I needed to supplement with formula at about 8 months, I felt a slight pang of guilt, as if I’d let my child down by not being able to exclusively breastfeed anymore. With my second baby, breastfeeding was easy from the start, and we were able to continue until we were both ready to wean. I thought breastfeeding was great, and it worked well for me. I was proud of being able to breastfeed successfully. I thought my experience was typical, but I was wrong.

Throughout the process of pregnancy and delivery, parents are inundated with information about the health benefits of breastfeeding for their baby, which are widely accepted. In fact, the American Academy of Pediatrics recommends breastfeeding exclusively for 6 months and, in 2022, increased the recommended length of time for continued breastfeeding to at least 2 years. The purported advantages of breastfeeding include decreased likelihood of everything from diabetes to asthma to eczema and even increased intelligence levels. Breastfeeding advocates point out that breastmilk composition changes over time to meet the needs of the infant, providing the “ideal” nutrients.

Several research studies have shown that disabled women are less likely than their nondisabled counterparts to breastfeed. The Disabled Parenting Project wanted to understand more about their experiences. We collected video interview data from 24 women who reported a range of disabilities, including intellectual, developmental, physical, sensory, and psychiatric disabilities. Some women had multiple disabilities. In this group, breastfeeding was common among the participants — more than one-half of the women reported breastfeeding at least one child beyond 6 weeks, and nearly one-third reported doing so for up to 6 weeks. Only 17% did not breastfeed at all. But what we found out was that it was not always a simple or intuitive process, and even those who did breastfeed often faced significant barriers.

Some Deaf women had challenges communicating with lactation consultants, and because of the drop-in nature of their visits, they were unable to request an ASL interpreter. Even though this is both illegal and culturally incompetent, we were told over and over about a lack of access to ASL interpreters. These mothers explained that most lactation consultants had little to no experience working with Deaf mothers and struggled to instruct them as they vacillated between trying to look up to lip-read and looking down to get the infant to latch. Blind women also reported some lactation consultants did not know how to communicate locations and directions to a blind mother effectively.

Other women reported that lactation consultants pushed traditional techniques and positions that don’t always work for disabled bodies, and some even received the message that hospital discharge was contingent on successful breastfeeding. Several women reported they felt intense pressure to breastfeed from hospital staff and felt personally blamed when breastfeeding problems arose. One physically disabled mother recounted that when she was unable to breastfeed successfully, she feared that this would trigger concern among hospital staff that she would be unable to care for her child. This is not an irrational fear, given the disproportionate rate at which disabled families are referred to the child welfare system.

Women shared that healthcare providers were insistent on breastfeeding and repeatedly emphasized that “breast is best,” even when the mothers were struggling physically and emotionally. One breast cancer survivor who had been medically advised not to breastfeed was told she would be unable to properly bond with her child if she didn’t nurse. Another mother who used the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) shared that breastfeeding was “enforced” in the program.  Women expressed significant distress when they struggled to breastfeed, experienced shame associated with having to use formula, and even felt like a failure if they couldn’t breastfeed. This was amplified for those who hoped breastfeeding would be an area of parenting unaffected by disability.

Several women reported they had an inadequate milk supply to breastfeed. Some women’s milk never came in, or they were unable to breastfeed for very long. Some babies were unable to latch, despite multiple solutions such as nipple shields. For some women, breastfeeding was grueling and exhausting. Supportive healthcare providers who provided encouragement and reassurance were especially valued by the mothers in our study. One mother shared that her physician eased her anxiety about having to feed her infant with formula and that it was “really important” to receive this reassurance.

What surprised me most was not that some women were unable to breastfeed, for various reasons that may or may not be disability-related, nor the negative emotions women experienced when unable to breastfeed. No, what was shocking to me was how thin the scientific evidence was supporting breastfeeding over formula. There are real limitations to this research, because of study design and confounding factors, and even the most robust findings support very small, even negligible, differences in outcomes. Despite this, breastfeeding has become a cultural and societal expectation, even a moral imperative.  In my opinion, the benefits of breastfeeding have been exaggerated, and the potential costs ignored. The cost I’m most concerned about as a psychologist is that the stigma of not breastfeeding results in shame and distress that can negatively affect mental health. Women feel intense pressure from health care providers and internal stress due to societal expectations and unquestioned knowledge of the benefits of breastfeeding over formula feeding. No one ever talks about the potential drawbacks of breastfeeding, including physical effort and exertion, the necessity of pumping if away from the infant, the dedication of women’s time, and having the sole responsibility for feeding. Formula feeding is almost never initially offered as an acceptable alternative. Our work in this area raised concerns about the strong emphasis that has been placed on breastfeeding promotion and whether the magnitude of benefits of breastfeeding is worth the distress experienced by women who experience difficulty.

For disabled women, specific disability-related factors may make either breastfeeding or formula feeding a better option. We found that most disabled women are motivated to breastfeed, and they demonstrate strengths in creativity and determination. All women deserve a fair and balanced presentation of options without being shamed for breastfeeding, formula feeding, or a combination. I patted myself on the back for breastfeeding my children and thought it meant something about being a good parent. All it really meant was that I was lucky enough not to face substantial barriers to doing so. I’m ashamed to admit I have probably passed judgment on those who don’t breastfeed, either by choice or circumstance. Now I know better. What no one will tell you about breastfeeding is – it’s okay, either way. Breastfeeding does not indicate anything about your abilities as a parent or reflect whatsoever on your dedication to your child. Your own emotional well-being is far more important. Don’t let breastfeeding woes get in the way of your parenting journey.

Andrews, E. E., Powell, R. M., & Ayers, K. B. (2021). Experiences of breastfeeding among disabled women. Women’s Health Issues, 31(1), 82-89.