Photo: Roberto Caruso, watercolour: Claire Roskey
The first few weeks of breastfeeding aren’t easy for many women. It’s not uncommon for a new mom—raw nipples exposed to a squalling, hungry newborn in the dark of night—to wish for a magic pill to make the whole thing easier. It wasn’t until my second baby was born that I learned said pill does actually exist. It’s available by prescription, and its generic name is domperidone.
Prescribed to me by my midwife at the low dose of 10 milligrams three times per day, this glorious little white pill promised to take the edge off a worry that gnawed at me around the clock until my mind, too, felt raw: Was I making enough milk to satiate my baby boy? Or, as time ticked on, was I marching us both toward another sleepless night filled with bawling, cluster feeding, sack-like empty breasts and enough salty tears to drown us both? The worry would begin each day when I awoke, and it grew with every hour, sucking at my already low energy. To combat it, I filled my days with self-imposed strategies for keeping up my supply. I would drink endless mugs of milk-making herbal tea and litres of water while popping fenugreek and blessed thistle supplements. I also ate a ton of carbs (which I had somehow convinced myself added up to more milk, although there’s no science to back this up).
What I desperately wanted was some kind of safety net to ensure I could count on my body to make the milk my son needed. Though he was gaining plenty of weight, the concern came from my experience with my first-born: Her constant fussing and cluster feeding had left me feeling unsure if my body was producing enough. For many moms, it’s those non-stop feedings or their baby’s slow weight gain that prompts the prescription, but it’s difficult to identify whether there’s actually a problem with low milk supply, because it ebbs and flows hour by hour.
After I got my prescription, it took just a couple of days to notice a bump in my supply. With each pill, I felt a bit like Alice in Wonderland nibbling the “eat me” cake, as if I were fuelling a kind of milk-making magic that was transforming my breasts from a pair of unreliable appliances to a set of fulsome, infallible machines that would crank out the required yield. It was the slightest annoyance to take three pills per day. But just like that, my supply was buoyed, and I was able to devote what energy I had left not to worrying but to tackling the mountain of tasks I had as a business owner and mother of two children under three.
While I was dutifully popping my pills, Yev Falkovich, another Toronto mother, was tearing up her prescriptions for domperidone for fear it would kill her. A day and a half into taking her medication—the exact same low daily dose that I had been prescribed—the first-time mother felt what she describes as a “crushing pain” in her chest beneath her rib cage that wouldn’t let up. “I felt like I couldn’t breathe, like there was something heavy sitting on my chest,” she says. Falkovich knew she had a heart arrhythmia, but it never came up when she was prescribed domperidone. When she went to see her doctor about the pain, she learned the condition can make taking the drug dangerous and even life-threatening. According to Health Canada, domperidone can increase the risk of serious abnormal heart rhythms and sudden death, and should be prescribed with caution to patients at high risk of developing abnormal heart rhythms. Immediately, Falkovich stopped taking the pills.
A day or so after giving up the medication, her symptoms went away. But she was devastated. Falkovich had undergone a pre-baby breast reduction surgery and knew that breastfeeding would not only be difficult but a long shot. Her doctors had warned her that she might not be able to produce milk properly because of potential damage done to the nerves and milk ducts during surgery. But she had resolved to do whatever she needed to in order to breastfeed. In her determination, Falkovich had seen three lactation consultants and several doctors, and had wound up with three prescriptions for domperidone. It had seemed like her only hope for breastfeeding her daughter. But Falkovich says she doesn’t remember any of the professionals she saw mentioning life-threatening dangers related to the drug—only the potential side effects of headaches and nausea. “I was just so desperate to make it work. When I wasn’t able to give my child breastmilk, it was like I was failing her,” she says. “Now I know what nonsense that was. My heart stopping would be by far the biggest failure.” Looking back, Falkovich, now pregnant with her second child, feels anger over the unknown risk she faced by taking domperidone. “People need to know more about it before they just take it,” she says. “There isn’t a conversation about the danger.”
One country does have domperidone’s risks in its crosshairs. The pills have not been approved for use for any condition in the United States and cannot be legally marketed there, despite several attempts by a pharmaceutical company to have the drug passed by the Food and Drug Administration (FDA). Still, domperidone is used in more than 100 countries around the world, including Canada. Here, there are almost two million prescriptions written each year, many of those for the purpose of boosting breastmilk.
This isn’t what the drug is intended for, though. Where it is licensed, domperidone is indicated to aid gastric issues. But the medication also stimulates the pituitary gland to bump up prolactin—what Jack Newman, one of Canada’s foremost doctors specializing in breastfeeding, calls “the milk-making hormone.” When administered to breastfeeding women, domperidone usually results in increased breastmilk supply, so doctors have been prescribing it off-label for 30 years in Canada. Few studies have been able to quantify its effectiveness, but a study of 1,000 mothers conducted last year by Toronto’s Hospital for Sick Children at Newman’s clinic showed that domperidone increased milk supply by 28 percent, according to Newman.
He has been prescribing domperidone off-label since it first became available in Canada in 1985. While some patients get a prescription for the drug on their initial visit to his clinic, the International Breastfeeding Centre, others are given different strategies to try first. “Sometimes we wait and see,” says Newman, who prefers to assess each mother and baby individually to determine whether milk supply issues might be solved without medication. First, Newman and his team teach mothers how to latch their babies properly. “The better the latch, the more milk the baby will get from the mother,” he says. They also train mothers how to recognize when their baby is getting milk from the breast—there’s a way to see if the baby’s mouth is filling by watching the jaw and throat area. They instruct mothers to finish one side, using breast compression, and then offer the other breast, to increase the flow of milk. Complete milk removal, he says, cues the body to make more milk.
If, after all that, supply still seems low—and Newman says low supply is very common—he might prescribe domperidone. While some doctors advocate for blood testing to measure prolactin levels before prescribing, Newman says the test can be problematic (prolactin levels are always changing, so timing of the test can affect its results). Most mothers notice a boost in supply as soon as a couple of days after starting the drug, but for others, it may take a week to 10 days.
Newman says about 10 percent of mothers on domperidone suffer transient mild headaches, a common side effect. In rare cases, women have migraines and find they have to treat them or stop the domperidone. For everyone else, Newman says, “it should be used as long as it’s needed.” He encourages women to take domperidone until their babies are well-established on solids so any milk supply drop that occurs when weaning off the drug can be made up by extra food. There are few studies on the excretion of domperidone into breastmilk, but it is assumed to be safe for babies given the low levels detected in milk.
Newman’s off-label use of domperidone reflects unofficial standards that are widely accepted among doctors, who use clinical judgment to prescribe medication they think may be helpful in any given case. By 2012, more than 2.2 million prescriptions for domperidone were being written annually in Canada. Although it’s unclear how many of those were for breastfeeding women, a recent British Columbia study found that domperidone was the drug most commonly prescribed to mothers in the first six months after giving birth. Between January 2002 and December 2011, the use of domperidone for new moms doubled, so that by 2011, 20 percent of BC moms who carried to full term were given a prescription for domperidone, and one in three moms who had preterm births were prescribed it.
In 2012, the year domperidone use reached its peak, Health Canada issued a safety notice warning that the risk of serious abnormal heart rhythms or sudden death from cardiac arrest might be higher in patients taking domperidone. This set off alarms that a number of physician groups and professional organizations, including Newman’s International Breastfeeding Centre and Motherisk, worked hard to silence, largely due to the fact that the studies Health Canada based its warning on involved patients who were, on average, over 70—much older than the breastfeeding population. “The results of the studies are not directly applicable to breastfeeding and should not change the way you normally manage otherwise healthy breastfeeding women,” one expert wrote in the journal Canadian Family Physician.
Still, Health Canada issued another warning in 2015. It said it had investigated 12 cases of adverse heart events (though not necessarily among breastfeeding women) and found domperidone was a possible cause of most of the events. Health Canada warned that patients who have heart conditions that change the rhythm of the heart—such as QT prolongation, which involves abnormal electrical activity in the heart—should avoid taking domperidone or risk life-threatening complications. Thus, domperidone should be prescribed, Health Canada said, at a maximum recommended dose of 30 milligrams per day. (This is the starting dose most doctors prescribe to breastfeeding women, although many will increase it to get better results. Newman says he may work his way up to 160 milligrams per day for women who need it, but he does everything on a case-by-case basis.) The 2015 caution came after a more comprehensive scientific review that considered 137 “serious heart-related events” reported to the World Health Organization between 1982 and 2013. None involved breastfeeding mothers.
Meanwhile, in the US, the FDA has issued several warnings on the dangers of domperidone use, including a public safety alert cautioning patients about illegally importing the drug as a breastfeeding aid. A recent article written by FDA authors in the Journal of Obstetrics and Gynecology flagged the “limited quality evidence for the effectiveness of domperidone for lactation enhancement.” The warnings included cautions about dangerous heart-related side effects.
Still, there have been no large-scale studies involving breastfeeding mothers that demonstrate they’re truly at risk, and doctors and midwives continue to prescribe the drug. “Nobody has more experience using domperidone in breastfeeding mothers than I do,” Newman says, adding that most women are ready to take the drug if advised, but he sometimes spends extra time explaining risks to worried mothers, most of whom will not experience adverse side effects. “They are now just stressed about the idea that they might die,” he says. Newman is plain about his frustration over Health Canada’s warnings, which he calls “ill-advised and wrong-headed.” He says they’ve created misunderstanding among health practitioners and women. “Mothers are being told you can’t take domperidone because you have high blood pressure or a heart murmur, or your father had heart disease,” he says. “It’s ridiculous.”
While Newman doesn’t order an electrocardiogram (ECG) as standard practice when prescribing domperidone, he will offer it to women who are concerned, and he does not prescribe the drug to women already known to have QT prolongation, which causes abnormal heart rhythms. For others who ask for ECGs, he will give requisitions. “We won’t say no,” he says. “But we’ll suggest that [test] are going to be normal.” Health Canada also recommends that women avoid the drug if they have heart disease, liver disease or low blood levels of potassium or magnesium, or experience dizziness, fainting or seizures while taking it.
Ultimately, it’s a mother’s choice whether or not to take the drug. “I say, ‘It’s up to you, but I advise you to take the domperidone,’” says Newman.
For Kara Jansen, a Vancouver-based physician and international board-certified lactation consultant, Health Canada’s warnings caused her to question whether prescribing domperidone had become too much of a crutch. “In medical school, we used it a lot, and most of the time it was because we didn’t really know what else to do,” she says.
Jansen says much can—and ought to—be done to improve breastfeeding before writing a prescription. There must be other doctors who agree, because prescriptions for domperidone have been slowly but steadily dropping since the Health Canada warning in 2012. In 2016, the number was down to about 1.98 million.
In her practice at the Vancouver Breastfeeding Centre, Jansen tries to see women as early as possible to perfect their latch. She educates them on how often babies feed—every couple of hours!—and encourages them to see that as normal rather than as a sign infants aren’t getting enough milk. She advocates feeding on both breasts and pumping after feeds. “Pumping is the best way to increase your milk supply,” she says. When women do need domperidone as an extra boost, Jansen issues a low dose for a short period, generally no longer than six weeks. “I always tell patients that it doesn’t produce milk—it optimizes the conditions for getting milk,” she says. “It’s not a miracle drug by any means.”
In my case, using domperidone helped extend a breastfeeding journey that was bound to be limited, given all that was on my plate. With the help of the drug and my trusty pump, I schlepped to work and meetings when I couldn’t bring my son. I breastfed him until he was six months old.
For Falkovich, who quit the drug and never looked back, her determination to breastfeed ultimately helped her trounce the odds. To boost her supply in those tough early days, she supplemented with a tube and a bit of formula, never missing a feed. Then the real magic took over: She established a healthy supply, and she happily breastfed her daughter for two and a half years. Next time around, she says, she’s not worried about having problems.