The Condition That Kept Me From Breastfeeding

The truth is, all those people I consulted should have been able to take one look at my chest and know that breastfeeding might be difficult, if not impossible, for me.
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Bright mother feeding her adorable son in the kitchen at home
Bright mother feeding her adorable son in the kitchen at home

In eighth grade, my best friend Jenny Platt brought me to her doctor. "Let's just ask her," she said reassuringly, her arm slung over my shoulders -- she had discussed womanly matters with this doctor before, and found her easy to talk to. So we took the bus over to a medical complex sandwiched in between the University of Massachusetts and some strip malls, into a bland, beige office where I took off my shirt and bra. "What's the matter with them?" I asked.

The doctor, too, was reassuring. "Nothing," she said. "They're just ... long."

My boobs seemed to lack bounce and elasticity. Indeed (and, it turns out, ironically), they looked more like the breasts of someone who had breastfed a couple of kids rather than those of an already fully developed 13-year-old girl. They were C-cups -- that weren't really cup-shaped at all.

"I see all shapes and sizes of breasts," the doctor continued. "And these are perfectly normal." Not normal like Jenny's perfect, perky breasts, of course, but not ugly, either. Just, you know, somehow missing the flesh in the middle that would, and should, create a nice line of cleavage. But normal. So she said.

Flash-forward 25 years, after many sexual adventures where my bra was left firmly on, and a lifetime of shamed over breasts that just didn't look like those in the 1970s Playboys that Jenny and I once discovered under a bush behind her house. All these years later, one of the things that excited me most about becoming a mother was the chance to breastfeed. I believed it would repair my relationship with my breasts, make me feel normal the way that doctor had pronounced me to be.

"How come my breasts aren't getting any bigger?" I asked a pediatrician friend, when I was six, then seven, then eight months pregnant.

"Sometimes that doesn't happen until you have the baby and the milk comes in," she said, just as reassuringly as Jenny and the doctor from 8th grade had. I accepted this news the way I had the doctor's pronouncement of normal: with the sinking suspicion that they were wrong.

At nine months and one day, after 35 hours of labor and a natural childbirth, my beautiful baby girl was placed on my breast and began suckling immediately. But three, four, then five days later, my breasts weren't responsive. "How come I don't have any milk yet?" I asked the midwives.

They were less reassuring.

A week after Enna arrived, I still had not one drop of milk. They assigned me a regiment of near-constant pumping, herbs, and imported Canadian drugs not intended for lactation failure (there is no such drug, of course) but that had a side effect of milk-making (a class of drugs known as galactogogues). Nothing worked. I shelled out several hundred dollars to lactation consultants who told me to just "try harder" -- pump more, nurse more, even feed formula through a tube attached to my breast that would simulate nursing. They told me my daughter was not talented at latching. They told me we were both doing it wrong.

I kept at it, pressured by the midwives and lactation consultants not to use formula or a bottle. Enna lost 12, then 14 percent of her body weight. I sat sobbing in the bathroom, not just because I wouldn't be able to keep my child alive with my own body, but because I was terrified of what I'd heard about formula-fed babies: they'd have lower IQs and a tendency to be obese. And, yeah, I was crying because my breasts weren't normal after all.

Enna's pediatrician put her hand on my forearm and said, gently but firmly: "Get some formula. Now."

The truth is, all those people I consulted should have been able to take one look at my chest and know that breastfeeding might be difficult, if not impossible, for me; I have a medical condition called breast hypoplasia.

You've never heard of it, right? Neither had my midwives, my OB, my pediatrician, my PCP, or my third cousin, a reproductive endocrinologist. Nor had any of the lactation consultants who saw me. Heck, even my computer is telling me that hypoplasia isn't a real word. I actually heard about it from a health journalist friend, who had randomly come across a post about it on Facebook. "Are you sort of missing the flesh in the middle of your breasts?" she asked me.

I looked down at my chest. Yes, actually, that's exactly how I'd describe it.

"Then I might know what happened to you."

I immediately scoured the Internet for information on breast hypoplasia. If your breasts are widely spaced (as in no cleavage, no matter how big they are), asymmetrical, contain stretch marks, are tubular in shape ("long," as per the doc) and/or don't grow during pregnancy, then, yep, you might have breast hypoplasia. A woman with this condition might not have the right parts to produce milk; they're either missing or severely underdeveloped.

There is, according to my lactation consultant sources, one study that cross-references breast appearance with ability to breastfeed, and the results are startling: women with a space between their breasts of 1.5 inches or more produced, on average, 50 percent less milk than women with normal breast spacing. "Sixty-one percent of the women followed were unable to produce a full milk supply within the first month," the study reports. Most of those women, like me, experienced no growth in breast size during pregnancy.

What makes it difficult to diagnose is that some women with breast hypoplasia can breastfeed just fine -- 39 percent of the women in the study above had a perfectly good milk supply. And other women with "perfect" Playboy breasts might have a similar condition called IGT, or Insufficient Glandular Tissue, giving them the inability to produce a lot of milk.

As many as one in 1,000 mothers may experience lactation failure, but there's no way to tell how many of them have breast hypoplasia or IGT, in part because they're not official diagnoses. There's no accompanying code that your insurance company can use for reimbursements. Hypoplasia is a "condition" only in the plastic surgery field, in which it's called "tubular breast deformity," which sounds even worse. Women with hypoplastic breasts and a lot of pocket change may get implants or breast augmentation, and if they have trouble breastfeeding later it may be blamed on the surgery, when in fact it's the physical makeup of the breast, pre-saline or -silicone, that caused the problem.

Reading about the condition, and perusing pictures of it, I felt I got off easy. My breasts looked pretty darn good compared to some of the women I saw (there's a reason the doctor pronounced me normal). The diagnosis confirmed my worst fears about myself -- I was officially deformed -- but it alleviated the top layer of guilt over not being able to breastfeed my kid.

I surrendered the vision of myself as a breastfeeding mother, and began to formula-feed. Once Enna was gaining weight and healthy, the panic diffused. But those subterranean seeds of shame kept sprouting. I was angry at those lactation consultants for taking my money and not realizing that in my case, breastfeeding probably wasn't going to happen. The diagnosis hasn't been legitimized by the medical community, or society in general -- according to Dr. Amy Evans, a fellow of the Academy of Breastfeeding Medicine, only 75 doctors in the world have a breastfeeding sub-specialty, and even some of those are skeptical about hypoplasia. Feeding my baby a bottle still made me feel like a criminal. After all, breast is best.

The reactions of my fellow moms didn't help. I stopped into the childcare room at my local food co-op to feed the baby, and the chatter in the room -- a discussion of weaning adventures -- came to a halt. They stared as Enna gulped back her formula-filled bottle.

I tried to get donations from an online milk-sharing group, but I was deemed unqualified, since I hadn't had a mastectomy or survived cancer. "If you are a mother with low milk supply who thinks that you have 'tried' everything, please let us try to help you some more," they implored.

I took Enna to a baby-wearing group, where another woman, baby attached to her breast, sidled up to me and whispered, "I give my baby formula, too -- just not in public." It was the first secret club I'd belonged to -- not the Masons, or Skull and Bones, but a class of formula-feeding mothers so ashamed that they pretended to breastfeed.

Pregnant friends said pityingly, "I heard what happened to you," as if I had been the victim of an assault. And then they'd add, "I hope it doesn't happen to me."

None of these moms were looking at my daughter as they said this, of course. Because if they did look at her, with her cherubic face, her caramel-colored finger curls, her golden smile -- she was one cute formula-fed baby -- they wouldn't have pitied me or feared replicating my situation. Yeah, my kid drank formula, full of things I would have preferred not to give her: cow's milk powder and corn syrup, to name two. She drank from a bottle, after "nursing" on my breasts for a few minutes at each feeding so that we'd get all the emotional benefits of breastfeeding, if not the physical ones. And she thrived.

Slowly, something changed in me. I began to be almost proud, defiant, about the presence of the bottle in my life. Breast is best, sure, but many of my breastfeeding friends had to give their children iron supplements or vitamin D drops to make up for what breast milk lacked. I didn't need to pump in the middle of night or hide in a darkened room to do so at work. I held up my kid as a poster child for bottle-feeding.

"This is your worst fear," I'd say. "This is what you're dreading if you can't make breastfeeding work." Friends would consult me about what types of bottles to buy, what brands of formula; I tried to be a fountain of knowledge, instead of a cautionary tale.

Because it's information that mothers should have. For most women, breastfeeding is really hard. It hurts. It can take weeks for mother and baby to get the hang of it. And a generation of well-meaning women, determined to reclaim the act as a lost art after the formula-push of the mid-20th century, can make it worse with their pressure and judgment.

These days, I've decided not to push bottle or breast, not to contribute to the complex cloud of emotions women feel about feeding their babies one way or another. But there is one thing I'm committed to: telling the world about breast hypoplasia, getting women to come out of the closet about it. It happened to me, and while I can't report that my relationship to my breasts is repaired -- and no, I'm not going to show you them -- my relationship to my child is fully fortified. My baby is not just fine: she's wonderful.

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