For Jamie Robinson, the changes were subtle at first. She found herself playing with her hair and hitting things. Soon, though, she was having six or seven panic attacks a day. Things then escalated into disturbing thoughts about killing herself and punching herself in the face. Robinson, 39, knew at that moment something was wrong.
“I’m looking at my own baby,” the Montreal woman recalls, “that warmth that washes over me had just died completely.” “That recurring thought that it had been replaced, that this wasn’t my baby, that maybe it was a robot baby because there was no emotional commitment on my part… And emotions rush into that space. The guilt, the feeling of panic. So, am I a bad mom? Am I losing my mind?” When her psychologist saw the distress she was in, he discontinued a breastfeeding medication that Robinson had recently stopped taking. The drug was domperidone, a gastrointestinal drug that can also induce lactation. But domperidone also acts as an antipsychotic, and psychologist Karen White believes Robinson was suffering from withdrawal symptoms. “[It] It kind of clicked because I’ve seen people have very extreme reactions to stopping various medications,” White recalled. “And we kind of went, ‘oh, this could be it.’ Jamie Robinson and her daughter Emma read on the couch in their Montreal home. Robinson says she suffered debilitating side effects from a medication she was taking to breastfeed. (Esteban Cuevas Gonzalez/CBC News)

Off-label prescription drug

Domperidone, which blocks dopamine in the brain, is approved in Canada as an aid to speeding up digestion, but it also has a side effect: lactation. Doctors and midwives commonly prescribe it off-label for this purpose. More than 120 million prescriptions for domperidone were filled in 2020, according to Health Canada. Thousands of mothers describe it in online forums as a miracle drug that helped them produce enough milk to nurse their babies. “It kind of sounded like a miracle drug,” said Emily Matreal, 29, who lives just outside Detroit and took domperidone in 2021 to help her breastfeed her son, Conner. Emily Matreal, who lives just outside Detroit, took domperidone when her breast milk suddenly stopped three months after her son Conner was born. (Emily Matreal) Health Canada told the CBC that while the agency is aware the drug is routinely prescribed to stimulate lactation, it has not been approved for that purpose. CBC spoke to nine women from Canada, the US and Australia who say they experienced debilitating psychological side effects when they tried to stop the drug. They described extreme anxiety, panic attacks, insomnia and intrusive thoughts so intense that they were unable to function or care for their children, often for months. Some were forced to stop working or move with their families. At least one attempted suicide. They all say that no one warned them that these things could happen. Many experts interviewed by the CBC said they believe such side effects are rare. “It’s very unpredictable,” said researcher Janet Currie, who wrote her doctoral dissertation on postpartum domperidone prescriptions in British Columbia. She says she’s helped between 15 and 20 postpartum women with severe psychological side effects wean off the drug over the past year. “No one can tell you exactly in advance whether you will have these symptoms and how severe they will be.” Domperidone is not approved as a lactation aid anywhere in the world and there are no large-scale clinical trials to shed light on how often these side effects occur. WATCHES | In 2012, Health Canada issued a warning about domperidone: Health Canada has issued a safety warning about a drug popular with nursing mothers. Canadian data do not report the reason a person was prescribed a drug. But a CBC analysis of partial data from BC, Saskatchewan, Manitoba and Quebec residents with public insurance found that of the nearly two million people prescribed domperidone between 2000 and 2021, more than three-quarters were women in their reproductive age. The only published reports of severe psychological withdrawal symptoms are case studies, including three published last month in the Journal of Breastfeeding Medicine. Health Canada has issued several warnings about domperidone, but for cardiac side effects, not withdrawal symptoms. In 2012, 2015and 2022the agency noted that it can cause irregular heartbeats and sudden cardiac death. Health Canada’s warnings about domperidone, which echo the manufacturer’s in the product monograph, say it should be prescribed in doses no higher than 30 milligrams per day for the shortest possible time. The European Medicines Agency has similar guidelines.

Banned in USA

In the United States, domperidone is forbidden, for any purpose, by the Food and Drug Administration (FDA) because of cardiac risks. But the FDA ban hasn’t stopped Americans desperate to breastfeed, like Matreal outside Detroit, from seeking it out. When Matreal’s breast milk supply dwindled three months after giving birth, she posted on a Facebook mom group asking for advice. There he learned about domperidone — and how to get it in the US, through a well-known Canadian doctor. “I thought, ‘well, that sounds safe.’ I’ll see the doctor and see how that goes,” Matreal said. Dr. Jack Newman is a pediatrician and breastfeeding specialist based in Toronto. She says she’s been prescribing domperidone for decades to help with lactation. (CBC) That doctor is Jack Newman, a pediatrician who runs the International Breastfeeding Center in Toronto and is one of the best-known doctors in the field. Newman’s books and online reference material on the use of domperidone to stimulate lactation are widely cited as evidence that the drug is safe for this purpose in breastfeeding support groups with members around the world. In an interview with the CBC, Newman stressed that if women were well supported by the health care system to breastfeed from the start, domperidone would not be needed. Lactation consultants at his clinic watch mothers breastfeed and recommend other techniques, such as latch correction or breast compression, before turning to medication, he added. He says the risks identified by regulators are exaggerated. “We’ve never had a mother go into cardiac arrest. And I’m talking about thousands of mothers we’ve treated over the years,” Newman said. “The dose of domperidone that Health Canada recommends – it’s not ‘you have to do this’ – it’s useless, it’s not going to work. And so, we know from experience that three tablets three times a day, and sometimes we go higher than it really helps, and it helps the majority of mothers.” Newman starts patients on 90 milligrams a day — three times Health Canada’s maximum daily recommendation — and sometimes goes as high as 160 milligrams.

“Our lives kind of started to unravel”

Matreal paid $100 and was able to make a virtual appointment with a lactation consultant at Newman’s International Breastfeeding Center in Toronto the next day. The consultant presented her case to Newman, who prescribed domperidone at 90 milligrams a day. The clinic sent the prescription to a pharmacy in Vancouver, which shipped the drug to Matreal’s doorstep. When her breast milk supply did not increase, Matreal contacted the lactation consultant at the clinic, who recommended increasing the dose to 120 milligrams. At this dose, Matreal said she started producing “a good amount of milk.” Three months later, she decided to stop taking the drug. Matreal says she was warned by the Newman Clinic to wean slowly so as not to disrupt her milk supply and that there may be some stress. At first it tapered off slowly, but then, eager to finish pumping and freezing her milk, she decided to stop altogether. Emily Matreal says she started experiencing symptoms like dry eyes and hot flashes within days of coming off the domperidone. (Emily Matreal) Two days after stopping the drug, Matreal noticed changes: dry eyes, hot flashes and sweating. “There was just a deep sense of panic. I had no appetite, I couldn’t eat, I couldn’t relax, I couldn’t sleep… And then our life started to unravel from there.” Matreal tried to get answers from the medical community, including Newman. In an email dated Oct. 10, 2021, seen by the CBC, she wrote to Newman, saying she “suffered horrible, horrible anxiety” trying to get off the drug. In an email response the next day, also seen by the CBC, Newman suggested she either take an antidepressant prescribed by her doctor or go back on domperidone and wean off “very slowly, over six months, let’s say”. “Your situation is very unusual, by the way, since I haven’t heard of anyone having symptoms like you describe after just three months of taking it,” he added. Matreal tried to go back on domperidone, she said, but her symptoms persisted. She said she found some solace when she returned to online mom forums and found dozens of other women who said they experienced the same symptoms when they stopped taking the drug. Emily Matreal says she lost the ability to care for her son Conner after she stopped taking domperidone. (Emily Matreal)

‘Heartbreaking’

It’s a familiar story for Dr. Kaitlyn Krutsch, assistant professor in the InfantRisk Center at Texas Tech Health Sciences Center School of Medicine, and author of three recently published case studies regarding discontinuation of domperidone. The center, which studies the amounts of drugs that enter breast milk, gets about a half-dozen calls a week from American women in crisis who are trying to wean themselves off domperidone and can’t get answers from their doctors, Krutsch said. Women were reluctant to disclose that they were taking a banned drug, Krutsch explained. And even when they do, he said, American doctors don’t…