What No One Tells You About Not Being Able to Breastfeed

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Collage: :Stevie Remsberg

NEW MOM explores the brilliant, terrible, wonderful, confusing realities of first-time motherhood. It’s for anybody who wants to be a new mom, is a new mom, was a new mom, or wants really good reasons to never be a new mom.

On the day after I gave birth, a lactation consultant visited me in the hospital. “I’m worried about you,” she said, watching me shove the little guy’s face into my nipple. She corrected my technique, analyzed the size of the baby’s tongue (a little short), and then turned her attention to my breasts themselves. They were not, she observed, very large. Did they grow a lot during pregnancy? Not really, I answered. “These tubes might have problems,” she said, gesturing toward my chest. “You’ll need to see a lactation consultant as soon as you get home.”

Only a day into being a mother and already I had something to feel bad about. As a childless person, I’d known breastfeeding is a big deal — I just didn’t really understand why. I had listened to long conversations between friends with kids about breastfeeding and thought, Jesus, either do it or don’t, it’ll be okay. The research seems fuzzy, at best, about the long-term difference between a breastfed and a formula-fed baby. Maybe a few IQ points, maybe benefits to the microbiome, maybe a stronger immune system? Or, maybe not.

What I didn’t get until I was in the delivery room, smushing my poor son’s face against my floppy breast, was the primal nature of the situation. Suddenly, you have to provide enough nutrients to sustain life for another human, using only your body. It’s a lot of pressure, not to mention pain. Within hours of my son’s birth, I had developed just the kind of desperate attitude that I had been determined to avoid: Breastfeed at all costs.

Two days later, another lactation consultant came over to our apartment, toting a giant scale. Out of the hospital, we were now in a race for the milk to “come in” — to replace the colostrum, a nutrient-rich yellow liquid secreted during an infant’s first few days.

This lactation consultant watched me breastfeed, then weighed the baby (no change), and then introduced me to the workings of a breast pump. We developed a new plan: Instead of just feeding the baby once, on me, I would breastfeed, then pump, then give the baby some formula via a small tube and a small syringe, a process known as “handfeeding,” the purpose of which is to avoid the possibility of “nipple confusion” caused by exposing a baby to a rubber nipple. At this point, I was still expected — and expecting — to sustain him with breastmilk once it came in. This method might take over an hour, and the baby would need to eat every two hours. But the previous day’s visit to the pediatrician had been somewhat dire. “He’s losing too much weight,” she’d said. “He needs to eat.”

Where was my milk? I kept picturing a ship, trying to dock. The H.M.S. Where Is My Milk. Who could tell me?

Of course, the internet stepped into the breach.

In the middle of the night, I started researching and buying products to increase my milk supply — herbal supplements, something called “lactation cookie” mix, teas of various kinds. I read maybe hundreds of posts on the subject, and became familiar with the statistic that only 1 to 5 percent of women can’t breastfeed, for various medical reasons that are rarely spelled out. The rest, it seems, are just not trying hard enough.

After five days of spending half my time in some form of baby feeding, the lactation consultant came back. At this point, I was a mess. I hadn’t slept in days. She watched me breastfeed again and then she watched me pump. She was soft-spoken, prone to “mmm-mmm” agreeing with much of what I said, so I was surprised by the firmness of her assessment: “You don’t have enough glandular tissue to support breastfeeding,” she said. “Some women just don’t.” My best path would be to pump every five hours or so, not necessarily when the baby was hungry, give whatever breast milk I could to the baby, and feed him formula as the real meal. Oh, and no more handfeeding. We no longer cared about nipple confusion.

In the immediate aftermath of the news that I couldn’t make very much milk, I did what I had been doing for the past week or so — I cried. I was sad. But as I dove back into the internet, I started to feel angry. In all of the hundreds of blog posts and bulletin boards and WebMD-style stories that I read, no one had ever mentioned anything about glandular tissue.

Insufficient glandular tissue (IGT) — or hypoplasia of the mammary gland — is a condition where the mammary tissue of the breast is supplanted by fatty tissue. It’s one of the main causes of primary lactation failure, or the failure to ever produce enough milk. (There’s also secondary lactation failure, or the inability to sustain a milk supply.) There are numerous theories about why some women don’t develop enough milk-making material during adolescence: Some studies point to exposure to toxins, other research has been zeroing in on insulin resistance as a cause. Diagnosis — and “diagnosis” might be overstating the process by which most women find out about it — is done through visual examination. The look of IGT boobs is distinctive: tubelike, often wide-set, asymmetrical, and with large areolas.

A tube. That’s what the first lactation consultant was talking about. And yet, she never addressed the problem directly. At no point did anyone say, Hey, it might not be possible for you. Over and over again, I got the message that every woman can breastfeed.

To get some clarity, I contacted Diana Cassar-Uhl, a licensed lactation consultant who wrote a book about IGT in 2014. She took issue with the 1 to 5 percent statistic immediately. “The 5 percent figure was introduced in a 1985 academic publication, then cited a lot, but never substantiated,” she wrote in an email. Cassar-Uhl, like others I spoke to, thought maybe that was a more accurate figure in the ’80s, when fewer women breastfed; now, with the majority of women at least trying to breastfeed upon leaving the hospital, more problems are emerging. Her number, based on a more recent study, is that an estimated 12 to 15 percent of women experience “disrupted lactation,” a statistic that includes more than “not enough” milk as a reason for stopping breastfeeding.

In Cassar-Uhl’s view, though, figuring out who has a physical barrier to making milk and who has social or psychological or even mechanical issues is beside the point. “’I’m of the mind that it really doesn’t matter whether the person maybe could have produced a full milk supply with ‘enough effort,’” she wrote. “If the normal course of breastfeeding (which itself is often misunderstood or even impossible for many Americans) isn’t sufficient for exclusive nourishment of that infant, there’s a problem that needs to be addressed.”

Linda J. Smith, La Leche League leader and member of the La Leche League International Board of Directors, agreed that probably more than 5 percent of women face real milk-supply problems but pointed to other, institutional barriers to breastfeeding, like a lack of paid leave, as more common problems. Still, she acknowledged that “the public health messaging around that is a fine line to walk.”

“If you were calling me as a mother with insufficient glandular tissue, I’d be having a slightly different conversation than as a board supporter,” Smith said. I took that to mean that acknowledging the reality that some women can’t produce enough milk is tricky in the face of so many preventable and fixable issues that women still face.

Nonetheless, it’s clear that low milk supply isn’t just a delusion. One study from 2008 from showed that “I didn’t have enough milk” and “breastmilk alone doesn’t satisfy my baby” as the two top reasons that women stop breastfeeding during the first two months. In 2014, research that looked at “disrupted lactation” found that it affected one in eight women who started breastfeeding, or around 12 percent — this was the study that Cassar-Uhl cited. That is a rough estimate, though. “To determine the true prevalence of early, unplanned weaning due to lactation dysfunction would require a prospective, longitudinal study had included clinical assessment of each mother-infant dyad,” the study’s authors write.

This kind of research could help women in ways beyond figuring out whether they can physically breastfeed. We know, for instance, that overweight and obese women breastfeed less than others, and breastfeeding exclusively (and for longer time periods) seems to indicate better metabolic health. Women who report postpartum depression also tend to breastfeed less, and for shorter amounts of time, but we are not sure yet what that relationship means. Black and Native people are more than twice as likely to develop Type 2 diabetes as other cohorts; is it a coincidence that they have the two lowest rates of breastfeed initiation of all racial and ethnic groups in America? What if we flipped the paradigm around, as one 2015 paper suggested, and looked at inability to breastfeed as a sign that something is wrong with a woman’s health? We might be able to help mothers — in addition to babies — through breastfeeding research. Sadly, that work has yet to be done.

“We study what we value,” noted Smith. “Breastfeeding still isn’t valued.”

What else happens when we don’t talk about breastfeeding limitations, and focus instead on encouraging women to keep trying harder? We drive women crazy. This comes through even in the dry language of academic research. “We regularly encounter women who have taken extraordinary measures to breastfeed,” wrote the authors of the 2014 paper. “Women visit multiple specialists, ingest countless herbal preparations, and endure every-hour pumping regimens, supplemental nursing systems, and topical ointments in an effort to establish a normal breastfeeding relationship … For these mothers, disrupted lactation constitutes a ‘lactastrophe.’”

In my 4 a.m. analysis of breastfeeding bulletin boards, I also witnessed this behavior. The lengths that women will go to breastfeed is legion: They will strap small tubes to their breasts to give formula at the same time as breastmilk, to keep the close contact with their babies intact; they will import a non-FDA-approved drug from Canada that is thought to help with milk supply; they will pump and feed and pump and feed for months, even as they know that very little milk is coming out of their bodies. Sleep, work, other children, partners — all other aspects of life seem to take a backseat to fulfilling the promise of a breastfeeding mother.

On a darker note, these efforts will sometimes hurt babies. An organization, Fed Is Best, exists to advocate for more inclusive messaging around formula feeding. In their literature, they assert that there is a body count of dead infants due to women attempting, against all odds, to exclusively breastfeed.

So what does this all add up to? In many ways, the system worked perfectly for me. I saw multiple lactation experts, starting in the hospital. I tested my breast’s abilities by spending a few days pumping, feeding and giving formula, and saw the result: Only by giving formula did the baby gain weight. And yet, I still felt pissed off.

It is condescending to not tell mothers the truth about breastfeeding — that it is not only hard, time-consuming, and often painful, but also it may not be physically possible for more women than we’ve been led to believe. “I learned, it always works,” says Marianne Neifert, a clinical professor of pediatrics at the University of Colorado Denver School of Medicine, professional speaker, and the author of some of the first studies looking at lactation failures in the 1980s and ’90s (she coined the term “primary lactation failure”). “Why would we say that? No organ always works.” Women with low milk supply, she told me, have the “heartbreak of not being able to breastfeed and the added insult of being told it was their fault.”

The current conversation around breastfeeding is a trap. According to lactation consultant Cassar-Uhl, we are treating breastfeeding as an “‘extra credit’ thing that the ‘good parents’ do, rather than as the normal, biological progression after gestation and delivery.” This sets up one world for those lucky to have support sufficient enough to even contemplate an activity that is so time-consuming, and another world for those women who, for instance, have to go back to work two weeks after giving birth. “I see that the people who are most devastated when it doesn’t work tend to be — and these are also the demographic most likely to achieve national breastfeeding metrics — the families with infants at the lowest risk for the health problems associated with not breastfeeding.”

“This suggests to me that our society has, in a way, moralized infant feeding choices, rather than normalizing breastfeeding. And that’s problematic on many levels.”

A week or so after learning of my glandular issues, I talked to my doula on the phone. I thought she just wanted to check in, so I monopolized the conversation, updating her on feeding and sleeping, mentioning I wanted to write about it all. Finally, she broke in with her own message — she wanted to apologize.

She was taking classes to become a licensed lactation consultant, she explained, and during that first, abortive breastfeeding in the delivery room, she had also clocked my tubes as a potential issue. Like the lactation consultant, she had not mentioned the specifics of her concern — that I might not be able to properly breastfeed. At this point, I wondered who had looked at my breasts and not thought that I lacked mammary tissue. My college boyfriend? My high-school locker mates?

It reminded me of the conversation that the lactation consultant and I had had at the end of her second and final visit. As she was packing up her scale, she paused. I had told her early on about the words of the first consultant, and it was starting to sink in that she probably had also noted my potential limitations a week or so before delivering her expert opinion. “How would you have ideally learned about this?” she asked.

Good question. Without speaking for all of my tube-breasted sisters, I would have greatly preferred clarity. I would have liked to know it was possible that I couldn’t produce milk. Breastfeeding is amazing and important; I would have still tried all the pumpings and feedings and maybe even desperation-Amazoned some herbs, but it would have been such a relief to get the full story about potential obstacles. I would like to have the first thing that I learned about motherhood to have been something else.

What No One Tells You About Not Being Able to Breastfeed