One afternoon in my lactation clinic, I saw two mothers who came to see me because they couldn’t make milk. One was pregnant with her second child, and the other was considering a third pregnancy. Each described how they had looked forward to breastfeeding, taken classes, put their babies skin-to-skin and birth, offered the breast on demand, and then waited, for days, and then weeks, for milk that never came in. As the second mother came to the end of her story, she said, “No one ever told me this could happen. Have you ever heard of a woman not being able to make milk?”

“Yes,” I said. “There’s one in the very next room.”

The dogma is that inability to breastfeed is rare – “like unicorns,” one blogger wrote – but I was seeing an awful lot of unicorns in my clinic. I couldn’t help but wonder – how often does breastfeeding come undone?

We set out to try to answer that question in a study published this month titled, Prevalence and Risk Factors for Early, Undesired Weaning Attributed to Lactation Dysfunction. We used data from the Infant Feeding Practices Study II, which followed more than 2000 mothers from pregnancy through one year postpartum. This approach offered us a window into the size and scope of this problem. It also meant that we had to triangulate “breastfeeding coming undone” from the data that were available.

Here’s what we had to work with: During pregnancy, moms were asked how long they planned to breastfeed. If they weaned before the study ended, they were asked whether they breastfed as long as they wanted to. We used these two questions to define whether weaning was early or expected, and whether it was desired or undesired. Moms also indicated, from a list of options, what they considered to be important reasons for weaning.

Nearly half of women in the study – 45% – reported early, undesired weaning. Among these moms, we wanted to find those for whom lactation fell apart – those who struggled with multiple breastfeeding problems. We defined disrupted lactation as early, undesired weaning among moms who attributed weaning to at least two of three problems – pain, low supply, and latch difficulties. We found that one in eight mothers met our definition. Among moms with symptoms of depression, one in five met our definition, underscoring the need to screen women with breastfeeding difficulties for depression and anxiety. We also found that women who were overweight or obese were more likely to experience disrupted lactation than normal weight moms.

Both our definition and our study design are imperfect measure of how often breastfeeding falls apart. Multiple factors affect whether a mom is able to achieve her breastfeeding goals, including maternity care, uneven lactation training for health professionals, lack of maternity leave and requirements to return to work. Better systems and quality lactation support might have allowed more of these moms to achieve their goals. We also don’t know whether mothers reporting low milk supply were physically unable to meet their baby’s needs, or were influenced by other factors, such as unrealistic expectations for infant feeding and sleep, which led them to perceive normal physiology as “not enough milk.” We will need prospective studies with clinical evaluation of moms and babies over time to tease out such questions.

Nevertheless, our study suggests that breastfeeding comes undone quite frequently, and the moms in this study who reached out for solutions had trouble finding them. Two-thirds of moms with disrupted lactation sought help from a health professional, but only 1 in 4 said the advice that they received was helpful. While 88% of women with undisrupted lactation had positive feelings about breastfeeding, only 58% of those with disrupted lactation rated their breastfeeding experience as favorable.

In my clinical experience, the unraveling of breastfeeding can take an enormous toll on mothers. Some moms have been told to “Just keep trying!” despite telltale signs of insufficient glandular tissue on physical exam, with widely-spaced, tubular breasts and no breast growth during pregnancy. Others describe gripping the arms of the rocking chair with each feeding to endure excruciating pain. Moms visit countless specialists, inject multiple herbal preparations, and endure every-hour pumping regimens, elaborate supplemental nursing systems, and elimination diets in an effort to achieve a normal breastfeeding relationship. Indeed, in our paper, we propose the term “lactastrophe” to describe the emotional distress some mothers experience when breastfeeding comes undone.

These experiences are real, and they are not rare. However, for too long, repairing breastfeeding has been a test of maternal determination, rather than an integral part of reproductive health care. For example, obstetricians routinely screen for breast cancer, but some have been reluctant to take responsibility for the functioning breast. Indeed, when we submitted this manuscript to an obstetrics journal, a reviewer suggested it really belonged in a pediatric journal, writing, “…the time frame covered by this paper clearly falls beyond the reach of time when most OB/GYNs are still caring for the post-partum mother.” Apparently, problems with the physiology of a woman’s breast are the responsibility of the pediatric provider, if that breast happens to be in the baby’s mouth.

Too many clinicians treat the lactating breast as a hot potato, leaving moms and babies lodged in the gap between pediatric, obstetric and lactation specialists. In an era where public health campaigns urge all mothers to breastfeed, we need to urge all health professionals treat breastfeeding management as an integral part of health care.

We also need to explore how best to support moms when lactation doesn’t work. Earlier this week, I met with a medical student, who shared that she was breastfed for 18 months, but her mother was unable to nurse her younger brother. Twenty years later, she said, her mother still worries over the fact that her son was not breastfed. We need to talk with “lactastrophe survivors,” and ask what helped them heal. And we must stop asserting that “All women can breastfeed.” As Marianne Neifert has written:

The bold claims made about the infallibility of lactation are not cited about any other physiologic processes. A health care professional would never tell a diabetic woman that ‘every pancreas can make insulin’ or insist to a devastated infertility patient that ‘every woman can get pregnant.’ The fact is that lactation, like all physiologic functions, sometimes fails because of various medical causes.

Of note, medical science has produced insulin and in vitro fertilization, restoring physiologic function for women with diabetes and infertility. We need to invest in research that will determine how and why breastfeeding comes undone. Based on rigorous research, we can develop and test strategies that can treat such problems, and we can disseminate the approaches that repair breastfeeding, so that more mothers can achieve their infant feeding goals.

Alison Stuebe, MD, MSc, is a maternal-fetal medicine physician, breastfeeding researcher, and assistant professor of Obstetrics and Gynecology at the University of North Carolina School of Medicine. She is a member of the board of the Academy of Breastfeeding Medicine. You can follow her on Twitter at @astuebe.

Posts on this blog reflect the opinions of individual ABM members, not the organization as a whole.