The College of Physicians and Surgeons of Ontario has expressed concern about the prescribing and oversight practices of a Toronto breastfeeding doctor in a case where a woman was prescribed domperidone, whose off-label use to induce lactation is controversial.
Domperidone is approved in Canada as a digestive aid, but commonly prescribed off-label to women struggling to breastfeed as a way to increase milk supply, sometimes at doses several times higher than Health Canada’s recommended maximum of 30 mg/day.
Some women who take it suffer severe psychological withdrawal effects when they stop it abruptly, which is what happened to complainant Joanna McCabe.
McCabe was producing enough breast milk and did not need the medication, according to an independent assessor who reviewed the complaint against Dr. Jack Newman.
“The Respondent did not meet the standard of care of a breastfeeding medicine physician practicing in the Province of Ontario,” the assessor wrote in a complaint decision issued by the College Feb. 28, 2024 and obtained by CBC News.
Newman would benefit from further education on “prescription of domperidone for lactation; management of adverse events related to domperidone; management of patients being tapered on domperidone; patient education regarding domperidone for lactation,” the College’s Inquiries, Complaints and Reports Committee wrote in the decision.
There were approximately 1.7 million prescriptions for domperidone filled in 2021, according to Health Canada. It’s not known how many were for lactation. A CBC analysis of partial data from B.C., Saskatchewan, Manitoba and publicly-insured residents of Quebec found that out of nearly two million people prescribed domperidone between 2000 and 2021, more than three-quarters were women in their childbearing years.
It can also act as an antipsychotic, because it blocks dopamine receptors in the brain.
In December 2022 CBC News published the accounts of two women who suffered severe psychological withdrawal effects when they stopped taking the drug abruptly, symptoms they say they were not warned about. One of those women – a resident of the U.S., where domperidone is not authorized for any purpose – was prescribed by Newman.
McCabe says listening to the CBC’s coverage made her wonder if this is what had happened to her.
WARNING: This story contains distressing details about suicidal thoughts and attempts. Correction: A previous version of this video included inaccurate Health Canada data about the number of domperidone prescriptions that were filled in 2020. That publicly available data has since been updated to show that 1.7 million prescriptions were filled that year.
Patient told she needed drug to breastfeed
McCabe was referred to Newman in October 2019 for breastfeeding concerns with her infant daughter, including breast infection and pain, according to the complaint.
McCabe, a registered nurse, told CBC in an interview she knew her daughter had a tongue and lip tie which were causing difficulties breastfeeding and went to Newman’s Toronto clinic, the International Breastfeeding Centre, seeking a corrective procedure to fix them. She said she was told by Newman at the time that she needed to take domperidone to increase her milk supply.
Newman prescribed McCabe 90 mg per day of domperidone, according to the complaint.
At a subsequent visit to the same clinic in November 2019, another physician increased the domperidone dosage to 120 mg/day, according to the complaint.
Notes from the clinic cited by the College’s independent assessor state McCabe was given an information sheet on domperidone, including instructions to taper slowly off the drug, at that November appointment.
McCabe disputes this, saying she never received any such information.
But even if she had, “the psychiatric risks of domperidone were not included in the Domperidone Checklist at the time the Complainant sought care at the IBC,” the College stated in its conclusions.
At the time, there was also less known about the psychological withdrawal effects of the medication, the college stated.
The Current18:43Women report alarming side effects from drug prescribed to help with breastfeeding
Then, many new mothers have been prescribed the drug Domperidone to help with breastfeeding, but no country has approved the drug as a lactation aid. We hear about a CBC investigation into those prescriptions — and the alarming side effects many women are reporting. [Note: Correction from Health Canada at https://www.cbc.ca/1.6673093]
Health Canada had issued several warnings about domperidone due to its potential cardiac side effects and recommended the lowest possible dose for the shortest amount of time. And while there were published case studies about the psychological side effects of domperidone withdrawal, Health Canada did not publish a notice about this until 2023.
Newman said he had no comment on the complaint when CBC News reached him by email.
In his response to the college regarding McCabe’s complaint, Newman said he has always encouraged the slow weaning of domperidone, but McCabe discontinued the medication without seeking his advice.
At the time, in 2019, Newman said the psychological side effects were not something he had encountered in his practice, but “the importance of proper dosage tapering is now discussed with patients with reference to possible psychiatric effects.”
‘I felt like a monster’
The stated reason for the instructions, which CBC News has reviewed, to taper off slowly were so as not to interrupt the baby’s milk supply. McCabe, like others interviewed by CBC, was not worried about interrupting her milk supply when she stopped taking the drug in the spring of 2020.
“When I stopped it initially … I started having intrusive thoughts. So my thoughts were that I was going to kill my children, which was terrifying. I felt like a monster,” she recalled.
“I was having suicidal ideation. I couldn’t sleep. I was extremely anxious. I was having panic attacks. I was terrified to tell people exactly what was going on because I didn’t want them to take my children away from me. And so what I ended up doing was I said to my husband, you can’t leave me alone with these kids,” she recalled.
McCabe saw Newman again in May 2020, the complaint stated, at which time she informed him of her symptoms and he advised her to taper off domperidone slowly. McCabe told Newman at that time she never received the information sheet containing these instructions.
McCabe also sought psychiatric care and was diagnosed with several mental health conditions, including bipolar disorder, and put on various medications to treat them, she said in an interview. These included antidepressants and benzodiazepines, some of which she became physically dependent on and is still struggling to taper off years later.
In 2022, pregnant with her third child, McCabe said she saw a perinatal psychiatrist who told her she did not have bipolar disorder and that her initial symptoms had been caused by domperidone withdrawal. But McCabe said she didn’t truly believe that until later that year, when she listened to the stories of other women who had experienced it in the CBC coverage.
“I was like, this is me to a tee. Like, I was bawling my eyes out like watching it,” she said. “I was still convinced that I had all these mental health problems.”
A Health Canada review, published in August 2023, found there is a risk of psychiatric withdrawal effects when women using domperidone to stimulate breast milk production suddenly stop taking it.
McCabe says she should have been informed the drug was an antipsychotic. Had she been told that, she says she never would have taken it.
Complainant is appealing
The independent assessor, whose identity is redacted in the complaint, but worked with the Herzl-Goldfarb Breastfeeding Clinic in Montreal, opined that McCabe had never needed domperidone to begin with, as in their opinion, she had been producing enough breast milk. The assessor also questioned the clinic’s decision to increase McCabe’s dosage.
“In my opinion, the [International Breastfeeding Centre] should have ensured follow up, for J.M., to facilitate her weaning off Domperidone as soon as possible. I believe Dr. Newman’s practice, of providing follow up as needed, increases the possibility of harm to his patients.”
The College’s Inquiries, Complaints and Reports Committee and Newman agreed he will complete a program of self-study to address the committee’s concerns and report back within four months “so that the College may ensure satisfactory completion of the education.”
McCabe says she does not feel her concerns were addressed by the College and has requested a review of the decision.
“All the pain and suffering for myself, for my family, for a drug I didn’t even need … that’s the hardest.”