The Milk That Never Was

Jayne Joyce, Oxford, United Kingdom

 Jayne Joyce shares a puzzling case of a mother who didn’t have any breast milk. This story is shared with the mother’s permission. Real names have been changed.

It was about five years ago that I worked with Lisa, her husband and firstborn daughter Megan, and I will never forget their dedication, their kind spirits and their courage.

Baby Megan was born at term and healthy. Her delighted mother put her to the breast immediately after birth. Lisa was strongly committed to breastfeeding and was well informed about why it was important, and how to get off to a great start.

All seemed to be going well at first. Megan clearly knew what to do, and Lisa settled back to enjoy the newborn snuggles. But by the second day, it was becoming obvious that something wasn’t right. Megan was increasingly unhappy, and as the days went on, she wasn’t producing wet and dirty nappies (diapers) as expected. By day five, Megan had lost a significant amount of weight and her parents and midwife became alarmed.

The family arrived at the specialist hospital breastfeeding clinic where I was then a weekly volunteer Leader. Over the next few weeks, we got to know the family very well. They attended every session, determined to give their daughter the best possible chance of being a breastfed baby.

Assessment of a feed and the feeding history did not suggest any obvious reason for the excessive weight loss. Lisa ensured that Megan went to the breast at least 8-12 times in 24 hours, and she appeared to be beautifully positioned and deeply attached. Lisa had never had any discomfort, pain or damage from feeding. Megan’s tongue and palate appeared normal, she seemed to be suckling vigorously… but she wasn’t swallowing. Where was the milk?

There didn’t appear to be any mother-related risk factors for low milk supply. No previous breast surgery or procedures, no history of polycystic ovary syndrome (PCOS), thyroid imbalance, infertility—all the usual questions were met with a negative. Yet milk supply seemed to be not just low, but non-existent. Although our hospital had a milk bank, donor milk was not available post-discharge. After some tearful conversations between her parents and staff, Megan started on formula milk and was soon taking volumes equivalent to 100% of daily intake. Now she was finally producing urine, stools and growing normally.

Lisa borrowed a hospital-grade double electric pump for additional stimulation, and to rule out the possibility that there was an unidentified reason why Megan might not be able to remove milk effectively at the breast.

The first time Lisa used the pump, nothing came out. We reassured her that this was not uncommon the first time you try to express. The milk ejection reflex can be very sensitive to environment and stress and can take a while to become conditioned to the new stimulus. We made her cups of tea, kept her baby close to her, and sat and chatted all day to help her relax while she persevered. We did the same thing the next day, and the next. Still no milk.

Lisa worked with the pump, and with an at-breast supplementer (supply line), for several weeks and never saw more than about two drops of her own milk. She did everything anyone knew about how to promote milk supply—she kept putting Megan to the breast, she pumped, she used her hands, she was even prescribed domperidone.[1] Still, never more than one or two drops were seen, and when she subsequently went on to have a son, again, she produced no milk.

Lisa later had a brain scan for reasons unrelated to her breastfeeding experience. She discovered that she has “empty sella syndrome” (ESS), in which the pituitary gland (where the hormones essential to lactation are made) shrinks or becomes flattened. Finally, an answer to the mystery of the missing milk.

Complete “lactation failure” is very unusual and that in itself would be a good reason to remember Lisa and her family. Yet that isn’t what which sticks in my memory. What I remember about them is their determination and optimism, the loving way they supported each other as a couple, and their gratitude for all the support they received. It sometimes felt that they were giving as much support to the clinic team as the other way around!

As it began to be obvious that their optimism was not going to bear fruit in milk production, their determination and commitment to doing the best for baby Megan never wavered. They were frank about their disappointment and their grief over the loss of the breastfeeding experience they had hoped for, but pragmatic and philosophical about needing to find other ways to keep Megan fed, close and comforted. We spent time talking about skin-to-skin, paced bottle feeding, slings and how to mother (and father) a baby who can’t be breastfed. I can’t remember whether they decided to continue with the supplementer as a longer-term option. After their discharge, they wrote a wonderful letter thanking the team for their care:

“You kept us sane and smiling on the journey and taught us about a hundred valuable lessons for future (hopefully successful) breastfeeding and about life in general. We don’t know where we would have been without you and the amazing sanctuary of calm that you created at the clinic, but it would certainly have been a less happy and well fed place than we are today. We three feel deeply grateful and privileged to have known you, and wish you every success and blessing for the future.”

It is a privilege to support any family, but even more of a privilege to support one that has dealt with deep disappointment with such grace.

Further reading

No Breast Milk After Delivery, Breastfeeding Support, 2018

Jayne Joyce lives in Oxford, United Kingdom, with her mathematician husband Dominic, three daughters, Tilly (16), Kitty (13) and Daisy (9), and a hamster called Hiccup. She has a background in social work with families, specialising in adoption, has been a Leader since 2003 and now works as an International Board Certified Lactation Consultant (IBCLC) with Oxford Baby Cafes Group.

[1] A drug with a side effect profile of raising prolactin levels, not prescribed in USA