Yesterday, we discussed a somewhat rare condition called Insufficient Glandular Tissue (IGT), in which breasts have inadequate glands (the hardware) needed to make milk. Click here to read the post and 0ur list of resources. As breastfeeding advocates, it is extremely important that we educate physicians and healthcare providers, the media, and moms to distinguish between inherent physical conditions like IGT that MAY make it difficult or impossible to produce sufficient breastmilk, and the breastfeeding boobytraps™ that have been sytematically erected so as to interfere with milk supply, so that moms THINK they couldn’t make enough milk, when actually they were managed poorly. We need to demand that medical schools and associations like the American College of Obstetrics and Gynecology develop curricula, continuing education modules and protocol for diagnosing and managing lactation issues like IGT. We need to validate and provide resources to the thousands of moms annually that suffer from IGT, can not breastfeed for other reasons or have been booby-trapped, and ENROLL THEM to join us in fighting for the rights of ALL mothers to make informed feeding decisions, achieve their personal breastfeeding goals or have access to donor milk if needed, and make a prepared, positive and empowered transition to motherhood.
Two important things to keep in mind about IGT, as per a comment thread yesterday from Diana West, IBCLC and co-author of Making More Milk: 1) not all women with insufficient glandular tissue have milk supply difficulties; and 2) even if a woman doesn’t have a full milk supply she can still breastfeed successfully! ”Successful breastfeeding” does not depend on the amount of milk! Click here to read more about the benefits of breastfeeding even when there is little or no breastmilk transfer.
Below is a moving personal story of how one breastfeeding advocate and IBCLC empowered her best friend to make the most out of a nursing relationship, despite the devastating diagnosis of IGT.
A cup or two, for my best friend
by Diana Cassar-Uhl, IBCLC, La Leche League Leader
Diana, mom to Anna, Simon, and Gabriella, is an Internationally Board-Certified Lactation Consultant (IBCLC) and La Leche League Leader in Orange County, New York. On active military duty as a clarinetist in the United States Army, Diana is thrilled for any opportunity to speak and write about breastfeeding to mothers and the healthcare providers who support them, especially in unique or difficult situations. You can email Diana at
During our junior year of college, my best friend Heather and I would sometimes spend a weekend day at the mall. While there, we’d get rowdy and extra-giggly when we hit the lingerie section. We found enormous humor in how different our breasts, and therefore, our bra-shopping headaches were.
“Gimme something bullet-proof,” Heather would say, referring to lots of padding for her 32A’s.
“Oh, wow! They’re making them with FIVE hooks and eyes, now … perfect for dates!” I’d respond, disgusted that the only bras they sold for my 34DD’s were obvious companions to 15th-century chastity belts.
“Hey, this one looks like a thimble!” Heather said, holding up a filmy pair of “cups” held together by little more than a few rubber bands.
“Yeah, and this one looks like a yarmulke for a guy with a really, really big head,” I answered, refusing to even touch the giant assemblage of spandex, elastic, and … was that stainless steel?
Heather and I combed through the bras, each of us discouraged by the extremes in our sizes. If only we were “average,” we could wear cute, lacy things, with or without padding, with or without underwires, in any color of the rainbow.
“I wish I could just give you a cup or two of mine,” I sighed. That would bring us both to C cups, blissfully slightly larger than average, but well within the norm for bra manufacturers.
“Yeah, maybe if you can give me one cup for this one, and two for that one, I’d be just right, “ she suggested, as we shrugged off what we had learned in our teen years was normal – that one breast might be slightly larger than the other. We figured that when one breast was not much bigger than a mosquito bite, it didn’t take much to make the other “slightly larger” than it.
Never did I wish more to give Heather “a cup or two” of my breast tissue than after her first baby was born. I was already a mother of two breastfed children, at that point both still nursing at 3 -1/2 and almost 2 years old. I was a La Leche League Leader, with sights on becoming an IBCLC. Helping mothers and their babies had become a vocation for me. I loved breastfeeding, and, because she was my best friend, I shared with Heather my feelings about it – including my own frustration when mothers gave up because “it was just too hard.”
During her pregnancy, Heather came to visit. We sat and marveled at her fertility chart, showing the cycle that resulted in the miraculous baby growing within her.
“Hmm. Were your luteal phase temps always so low? It hardly looks like you ovulated.” In a normal menstrual cycle, progesterone surges after ovulation, pressing a woman’s basal body temperature higher than it had been during the estrogenic/ovulatory phase, typically the first half of her cycle. Heather’s temperature didn’t seem to rise significantly, even once the embryo had implanted.
“I always spotted a lot before my period. I did this time, too, even though I was pregnant,” Heather told me. I recognized the signs of what was probably a very mild luteal phase defect … obviously mild because she had successfully gotten and stayed pregnant without medical assistance.
“So, when’s the booby fairy supposed to visit?” Heather asked me. She was already well into her second trimester, and hadn’t felt any heat, sensitivity, or growth in her breasts.
“Ummm … well, mine were like cannonballs by 5 weeks, and they just got hotter and bigger until the ultrasound at 19 weeks, when they finally quit growing!” I also remembered my nipples being so sensitive, it hurt to wear a shirt without a bra.
I talked to my mom about a week after Heather’s visit. “Mom, I have a bad feeling about Heather. I am afraid she’s not going to be able to breastfeed.”
“Why not? Can’t everybody breastfeed? She’s healthy, why wouldn’t she be able to?”
I didn’t know the answer, but bad feeling didn’t go away.
Fortuitously, at around the same time Heather was entering her third trimester, I had volunteered to help Diana West, IBCLC, and Lisa Marasco, M.A., IBCLC, by reading and offering suggestions on an early draft of their manuscript for The Breastfeeding Mother’s Guide to Making More Milk. Diana’s website http://www.lowmilksupply.org/ is a valuable resource for mothers with milk production issues, as is, of course, the book. I packed a wealth of information about milk production, hormones, anatomy of breasts and babies’ mouths, galactagogues, pumping, and so much more into my brain, but couldn’t shake my feeling about Heather.
Baby Sarah was born at term, but a few weeks earlier than anyone expected. She was tiny, at just over 6 pounds. She was breech, and born via c-section. The nurses at the hospital told Heather, once she had recovered enough to be with Sarah and breastfeed her, that she looked like a natural. “You must’ve read a lot of books, you look like you’ve done this before!” Heather was so proud of herself and let Sarah breastfeed as much as she seemed to want, which was, as is the case for many newborns, pretty much all the time.
I went to visit Heather and 5-day old baby Sarah when they had settled in at home. Sarah had lost 10% of her birth weight, which was especially disturbing since she had been born so tiny to begin with. That 10% of birth weight maximum loss didn’t add up to many ounces of wiggle-room. Sarah was attached to Heather’s breast for 7 straight hours during my visit. I watched her nurse and concurred with the nurses from the hospital: Heather was a natural! Sarah’s latch was great, Heather looked so comfortable and at ease. She didn’t mind spending all that time in the chair, nursing her baby, especially since her husband was so supportive and her friends were bringing meals for the new family.
Sarah was latching on well, Heather had no pain, and they were definitely breastfeeding “on demand,” but the first red flag I saw was that, despite being on the breast pretty much non-stop during my visit, Sarah was not swallowing. I could see that she was sucking, vigorously at times, even, but there was no “kuh” sound to signal that she was swallowing and transferring milk.
The next red flag presented itself as I asked Heather to switch breasts, in an effort to rouse Sarah a bit and encourage her to feed effectively. I began teaching Heather about breast compressions, but stopped short when she lifted her tank top, exposing both breasts. How could I have never noticed her breasts before? I didn’t want to stare, but what I saw as Heather positioned Sarah onto her other breast was exactly what I had read about and seen in Diana and Lisa’s manuscript and the websites I read for better understanding. Heather’s nipples were bulbous, much bigger than it seemed the rest of her breast warranted, and her breasts were very widely spaced (more than a hand’s width between them). I thought back to our summers at college, when we spent days in swimsuits. Sure, Heather’s breasts were small, but I had never noticed how widely spaced they were, and I guess I never had any reason to look at her nipples back then, nor would I have recognized anything was different.
I asked Heather if she had felt any sensation of milk coming in, any feelings of fullness at all.
“Well, this one tingles a little bit,” she said, holding the larger of the two, “but just under here, not anywhere else. Is that normal?”
Is that normal? My best friend sat breastfeeding her tiny, tiny baby for seven hours, completely unaware that something was terribly wrong. Could I tell her what I thought? I had no resources with me to share with her – this wasn’t a breastfeeding help visit, I had driven the 2 hours to her home so that I could spend some time with her, make her some dinner, maybe hold the baby while Heather took a shower or a brief nap. I remembered how deliriously tired and emotionally overwrought I had felt in those early days.
I took a deep breath. “I’m not sure if it’s normal, to tell you the truth. She doesn’t seem to be transferring a whole lot of milk. Do you have another weight check soon?” Sarah had been soiling diapers, and I knew that sometimes, after a cesarean delivery or a stressful labor, both of which Heather experienced, a mother’s milk might not come in right away … but here it was the end of the 5th day and still, no milk. “Make sure you’re staying in close touch with your pediatrician,” I advised her. “And don’t freak out if she tells you to supplement, because there are ways we can do that and still keep breastfeeding on track. Call me if you need me.”
I left that evening and cried the entire drive home. Immediately after I put my children to bed, I started fervently researching. I asked some more experienced La Leche League Leaders and IBCLC’s to confirm what I suspected: that Heather had mammary hypoplasia/insufficient glandular tissue in her breasts. I kept in close touch with Heather, and went to visit her two days later. This time, I brought information for her to read, as well as a big container of fenugreek capsules, 2 pounds of sesame seed candy, and another night’s dinner. Sarah had gained about an ounce since I had shown Heather how to use breast compressions to keep Sarah interested in nursing, but it wasn’t enough and Heather was frustrated. “I’m nursing her non-stop, but I still don’t feel like my milk came in,” she cried. “There’s no dripping, nothing. And when I tried pumping today, I didn’t even get enough in the bottle to coat the bottom.”
I sat for a few hours with Heather while she read, looked at pictures of hypoplastic breasts, and we cried together. I told her about at-breast supplementers, and assured her that she had done all she could to get breastfeeding off to the best start. Once she understood that this wasn’t her fault, that she just didn’t have a milk factory, Heather could begin the process of mourning the breastfeeding relationship (see this excellent resource: http://www.mobimotherhood.org/MM/default.aspx ) she had envisioned for herself and her baby during her pregnancy.
But, not so fast! I asked Heather to get as much information she could from her health care team. On the plus side, her pediatrician was very breastfeeding-friendly and was conservative when it came to recommending a supplement for Sarah. The goal was to get Sarah back to her birth weight as soon as possible but not to stop breastfeeding, even if that meant Heather was nursing around the clock. Sadly, though, no one – not her obstetrician, not the pediatrician, not her midwife, and not even the IBCLC she sought counsel from had ever heard of hypoplastic breasts or insufficient glandular tissue. My research had indicated that 1 in 1000 mothers might be affected with this condition, but we were both surprised to discover that insufficient glandular tissue is largely unknown in the medical community.
Heather began supplementing Sarah with any of her own milk she was able to pump (usually 1-2 ounces each day), and with formula, fed through a supplemental nurser, a thin tube attached to a vessel that held the supplement and Heather could wear around her neck, taped to her nipple (see text below for a comparison of the two available on the market). When Sarah was hungry, Heather would feed her at the breast, which both gave Heather the nipple stimulation she needed to encourage her maximum milk production, and gave Sarah satisfaction at the breast. Both were vital to ensuring a lasting breastfeeding relationship.
While Heather had some feelings that her body had failed her, frustration at the amount of time she had to spend preparing and cleaning the pump and supplementer each day, she realized she was giving Sarah every drop of milk she made, and was a breastfeeding mother despite having insufficient glandular tissue. Even with daily doses of herbal galactagogues, she never made more than half of what Sarah needed to thrive, but once Sarah started taking solid foods, Heather noticed the amount of formula she needed to give Sarah each day went down. At the 12-month mark, Heather happily retired “the rig,” her maybe-not-so-affectionate name for the supplementer, except for the last nursing before Sarah went to sleep. The rest of the day, Sarah was just like any breastfeeding toddler, coming to her mother for “nigh-nighs” when she needed a pick-me-up or a reminder that her mother was close at hand. Sarah weaned herself shortly after her second birthday.
Heather is expecting her second baby in a few weeks, and she anticipates those early days after his (or her) arrival with some trepidation. She knows that the work she did to produce milk for Sarah, and the time she spent breastfeeding her, will result in increased milk production this time around, but will she make enough to exclusively breastfeed this baby? Heather knows her colostrum flows well (colostrum production is not dependent upon presence of glandular tissue) and will be all her baby needs in those first two days of life, but when will she know it is time to begin supplementing? How much, how soon? Many babies get enough from their mothers until around 5 weeks, when milk production peaks and the baby needs a full supply to continue gaining weight, according to Breastfeeding Answers Made Simple by Nancy Mohrbacher (page 233). Until the baby comes and breastfeeding is underway, Heather won’t know how it will all go.
Heather feels no regret about her breastfeeding experience with Sarah – she knows she did the best she could with the resources and circumstances she was up against, but she also knows that breastfeeding with insufficient glandular tissue requires careful planning, a strategy unique to each mother’s situation, and energy a lot of mothers of newborns might not be able to – or want to muster. Remembering that breastfeeding and lactation, two terms that are used interchangeably, are not the same thing, and that a mother can breastfeed and confer many of the benefits of doing so whether or not her breasts supply all of the calories and nutrients her growing baby needs, can be encouraging to a mother who is surprised by her own failure to lactate.
I’m an IBCLC myself now, and Heather (as well as another very close friend with hypoplasia) has been my inspiration to not only learn everything I can about insufficient glandular tissue, but to spread the word and reach as many mothers and healthcare professionals as I can. If you want to know more about mammary hypoplasia/insufficient glandular tissue, or how to support a mother who finds herself struggling with this condition, please refer to this comprehensive article, which first appeared in Leaven, La Leche League International’s Leader publication: http://www.llli.org/llleaderweb/LV/LVIss2-3-2009p4.html .
Post-script: Heather had her baby, another daughter named Abby. Abby arrived via uncomplicated VBAC after a pleasantly quick labor. The first few days went well, with Abby getting colostrum and Heather feeling her milk come in … even waking up one morning with dripping milk and a hard spot on her breast! There were a few days of jaundice (severe enough to require admission back to the hospital for phototherapy) but Abby’s bilirubin came down quickly. While Heather was disappointed by the need to supplement, she remembered that her number one priority is to feed her baby … and she is thrilled to note that, between offering all of Abby’s feedings at the breast (most with the supplementer) and pumping a few times a day (putting whatever she pumps into the supplementer), Heather is using less formula and producing considerably more milk than she did at this point with Sarah. While thankful to be feeding Abby at her breast and producing most of what Abby needs to thrive, Heather has her moments of frustration and anger, for example, when the formula she was using for Abby’s supplements was recalled, or when she has to down the herbal preparations that help boost her milk production (“they’re NASTY!” she tells me), or when she just doesn’t feel like pumping – again – after Abby nurses and Sarah, now 4 years old, wants some time with her mother, too. Some might consider Heather’s efforts to breastfeed, despite having hypoplastic breasts/insufficient glandular tissue, heroic; Heather just says “I’m going to have the feed the kid somehow, I might as well do the best I can to breastfeed her.”
For more resources on Insufficient Glandular Tissue, see our post yesterday (links and resources listed at the end)
We love this story and applaud Heather and Diana. However, we couldn’t help but sorrow for all the women who don’t have a best friend like Diana, and whose babies are not getting the help they deserve from our health care system; from physicians, hospitals and health professionals. If you suffer from IGT, how were you diagnosed and were you satisfied with the help you got? How did you cope?