Chronic Low Milk Supply: A Search for Solutions
Questions and answers with Laurel Weijer, UF assistant director of admissions and a mother of two
About the subject and author: Breastfeeding has an important role in infant and maternal health but what happens when it does not go as planned? University of Florida Assistant Director of Admissions Laurel Weijer is on a mission to help figure out what drives the frustrating problem of chronic low milk supply. Laurel Weijer has her Bachelor of Arts degree in the history of science & medicine from the University of Chicago and her Master of Arts degree in nonfiction writing from Johns Hopkins University. She will be pursuing a master’s degree in epidemiology with the goal of eventually completing a doctoral degree in epidemiology.
Question: What interested you about pursuing a degree in epidemiology and how does it tie in to your breastfeeding struggles?
Answer: I am the proud mother of two wonderful kids, ages 5 and 2. When my 5-year-old was born, I expected to breastfeed exclusively. I prepared myself as thoroughly as I could — reading books, taking a birth and breastfeeding class at the hospital where I would be delivering, and talking to friends who had kids. To be honest, it never occurred to me that there was a chance I wouldn’t be able to make enough milk. I knew that nursing could be tricky and there were plenty of potential pitfalls. But no one ever warned me that not producing enough milk was even a possibility. In fact, quite the opposite! I was assured that given enough demand, every woman could make enough milk.
Unfortunately, this was not my experience. After four months of triple feeding, which included nursing, pumping and bottle feeding, then exclusive pumping and trying as hard as I could to increase supply, I gave up and went to formula feeding only. I can honestly say I didn’t think about breastfeeding or lactation at all again until I got pregnant with my second child. Going in, I had some hope that things might be different — I’d heard from people who had had trouble breastfeeding their first children then had plenty of milk with their second children. I told my husband that I would try really hard for two weeks, and if it wasn’t working, I would go to 100% formula feeding and never think about breastfeeding again.
Well, that’s not quite what happened. When I experienced the same struggles with my son, I realized I wasn’t satisfied with not knowing why this was happening. I began researching possible causes of chronic low milk supply, or CLMS. I came across an amazing Facebook group called the IGT and Low Milk Supply Support Group, which is, I believe, the largest concentration of parents with CLMS anywhere in the world. I discovered that chronic low milk supply — defined as the inability to produce enough milk despite following all best practices — can be related to a number of hormonal conditions. Knowing this information allowed me to discover some important things about my own health. Unfortunately, I also discovered that there is a significant lack of knowledge about CLMS and support for parents that face it, and that it is an extremely under-researched area.
This research has also raised many questions that no one has yet answered. My goal in getting my degree in epidemiology is to have a better understanding of some of the causes of CLMS and find answers for other parents who experience it.
Q: What will you be researching as part of your master’s degree?
A: I plan to research some of the hormonal causes of CLMS. I am especially interested in polycystic ovarian syndrome, or PCOS, and thyroid dysfunction and determining what factors influence whether a mother with these conditions experiences CLMS. I suspect that the answer is related, at least in part, to epigenetics and environmental exposure. My ultimate goal is to create a standardized, evidence-backed plan of testing and treatment for parents who experience lactation insufficiency. I also hope to shed light on what the proper reference ranges are for lactation, as I suspect they are different than for non-lactating women. I believe that, like erectile dysfunction in men, CLMS is a marker of endocrine dysfunction and that having a thorough testing and treatment plan will result in better long-term health outcomes for women who experience it.
Q: Are there others who are working on this topic?
A: Within the scientific community, not that many. The two researchers that I especially admire are Laurie Nommsen-Rivers, Ph.D., RD, ICLC, an associate professor of nutrition and the Ruth Rosvear endowed chair of maternal and child nutrition at the University of Cincinnati, and Shannon Kelleher, Ph.D., a professor of biomedical and nutritional sciences at the University of Massachusetts-Lowell. Both have made very important contributions to this field. However, there are many researchers who are working on topics that are tangentially related, and I look forward to hopefully collaborating with them as well.
Aside from those researchers, there are two initiatives of which I am happy to have joined. Through the IGT and Low Milk Supply Support Group on Facebook, I have had the pleasure of connecting with many other women with scientific and medical training who have also experienced CLMS. Together, we have formed the Low Milk Supply Research Association. We are working on literature reviews and other projects to connect the dots in the literature as well as to raise awareness about CLMS among medical providers. I’m happy to say that our first op-ed was just accepted to Breastfeeding Medicine.
This experience also inspired me to start the Low Milk Supply Foundation, a nonprofit organization whose mission is to raise awareness and address the gap in research and knowledge about CLMS. We have just launched and I am incredibly excited to see what we can do in the next several months as we ramp up.
Q: What are the theories for why some women have difficulties establishing a milk supply?
A: There are a number of hormonal conditions that are known to be related to chronic low milk supply — among them are thyroid dysfunction, polycystic ovarian syndrome and insulin dysregulation/metabolic syndrome. There is also a structural deficiency knows as insufficient glandular tissue, or IGT, wherein the breast tissue does not develop fully during puberty, pregnancy or both. Then, there are secondary causes like tongue ties and oral dysfunction in babies. The tricky thing is that without standardized testing and treatment, women who experience CLMS are at the mercy of their providers’ knowledge about these causes. Given the paucity of research, and the fact that lactation is generally a footnote in medical education, too many are dismissed with some version of “Well, some women just don’t make enough milk.” Worse, because lactation is so often portrayed as a “perfect process” that just comes down to effort, many who experience CLMS are directly or indirectly blamed for the problem.
It’s important to note, too, that we are not talking about a one-in-a-million problem. The research we have done estimates the number of lactating parents who experience CLMS to be between 5 and 15%. Based on the 3.6 million live births in the United States in 2020, that would suggest this is an issue that potentially affects anywhere from 180,000 to over 500,000 breastfeeding women in the past year alone. It is also important to note that the conditions that we know contribute to CLMS are quite common. One in 10 women of childbearing age is affected by PCOS, 1 in 8 women has thyroid issues, and rates of insulin resistance, pre-diabetes and Type 2 diabetes are on the rise. Thus, it is really important that providers are aware of this information and how these conditions can affect lactation.
Q: Who should a woman see to help figure out breastfeeding problems?
A: First, it is important to determine if the problem is primary or secondary lactation insufficiency. Primary insufficiency occurs when a woman is never able to bring a full supply in and may have had warning signs, such as a lack of breast growth during pregnancy, no breast changes after pregnancy, no feelings of engorgement, etc. These are the cases that are more likely to be related to hormonal and/or structural conditions like the ones discussed above. These parents will likely need a team that includes an international board-certified lactation consultant who is well-versed in CLMS, as well as a medical provider who is willing to investigate the possible causes thoroughly. I highly recommend Mary Ryngaert at UF Health as one lactation consultant who helped me. UF Health also has other lactation consultants who are all well qualified. I also recommend that parents who experience primary lactation insufficiency consider applying to join the IGT and Low Milk Supply Support Group on Facebook and visit the Low Milk Supply Foundation website. For those on Instagram, @LowSupplyMom is also a great resource for learning more.
Parents with secondary lactation insufficiency generally fall in the category of starting out strong but then experiencing struggles that lead to low supply. The good news is that the causes of secondary lactation insufficiency are generally easier to find and treat than primary lactation insufficiency. For these parents, an IBCLC will be the best resource.