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Too much of a good thing: My life with hyperlactation syndrome

Since having my first child years ago, my body has made an abundance of breast milk — and it's never stopped.

Elisabeth Anderson-Sierra is a mom of three in Oregon who has hyperlactation syndrome, a rare medical condition that causes an oversupply of breast milk. She shared her story with TODAY on behalf of BabyBuddha, a company that sells breast pumps and related products, where Anderson-Sierra is the director of Lactation Services. 

I was about halfway through my first pregnancy when I realized something was wrong. I was only 13 weeks along, but I was producing breast milk — a lot of it, about 20 ounces a day. 

Eight years later, and that number has increased tenfold. I’ve had three kids and the breast milk production has never slowed or stopped. I now pump about 200 ounces each day.

Milk Mom, Lactation Syndrome
Elisabeth Sierra-Anderson, who has hyperlactation syndrome, with her family.Courtesy BabyBuddha

About eight years ago I was diagnosed with hyperlactation syndrome, a rare medical condition that causes an oversupply of breast milk. In my case, the oversupply is both dramatic and life-altering: It never stopped in between my pregnancies and now that my youngest baby is five months old, remains. I’ve been told by medical professionals that without medical intervention — either non-FDA-approved medication or a double mastectomy — my production won’t stop. 

It took some time to be diagnosed. I believe when I was reporting to various doctors the number of ounces I was producing, it was misinterpreted as milliliters. 

A midwife was finally the one to realize that something was wrong. She came over after I had been nursing my first child for a week and opened our freezer, then our outside freezer, and was both shocked and alarmed. “I’ve never seen anything like this,” she said to me. Not exactly words of comfort, but validation that what I was experiencing was far outside the norm. 

Milk Mom, Lactation Syndrome
Elisabeth Sierra-Anderson's freezer filled with breast milk.Courtesy BabyBuddha

For several years, my — and as a result, my family’s — entire lives revolved around my pumping schedule. Because I needed whatever pump I was using — and I tried them all — to have maximum strength, I needed to be plugged into a wall. Sure, I made the best of it with extension cords and tried as best I could to be productive, but leaving for long periods of time wasn’t an option. Nor was staying at any place other than home — so many events were cut short because I needed to get home to pump. 

I can’t lie and say there wasn’t some resentment on my part for being saddled with this condition. The pump I was using weighed 12 pounds and was the size of a soccer ball. It was like an actual ball and chain. I did eventually find a portable pump that’s strong enough to handle my production, which has been helpful.

Milk Mom, Lactation Syndrome
Pumping on an airplane. Courtesy Elisabeth Anderson-Sierra

And in one of the twists in life you never see coming, I was just named to the Guinness Book of World Records for “Most Breastmilk Donated by an Individual,” for donating 54,000 ounces to a milk bank between February 2015 and June 2018. 

But that doesn’t count the whole picture — the number of total ounces I’ve donated is closer to 350,000. 

While the mental and emotional toll of this diagnosis is the one that wears on me the most, there’s a very real physical toll, too. Breastfeeding is taxing on the body and I have been admitted to the hospital on several occasions for dehydration and malnutrition. 

There’s the financial cost as well: the industrial freezers to store the milk; the specific sizes of lay-flat bags to store the milk; the alarming rate of wearing through nursing bras; packing tape and shipping costs; nursing pads; not to mention all those pumps I went through to find the right one. 

Having more freedom now — I pump in the car to and from school pickup, for example, and while making dinner — has enabled me to try to focus on some of the good that has come out of a really difficult situation. The main silver lining was the ability to provide all the milk that my babies needed, as I know that is a very real stressor in a breastfeeding journey for so many. I support local milk sharing and also donate to a milk bank for micro-preemies. Normalizing breastfeeding and milk donation is my main goal.

But this way of life can’t continue forever and there’s no way I’ll be able to get to menopause — still likely many years away since I’m only 35 — and keep this up. I’ll have to decide what course of medical intervention to take to end this part of my life’s journey, and all of it seems scary. Until then, I try to focus on the positive that’s come out of my diagnosis and the many babies and moms I’ve helped over the last eight years.