Front Burner - Questions about ‘miracle’ drug used for breastfeeding

Episode Date: December 8, 2022

Domperidone, a gastrointestinal medication, is often prescribed off-label to breastfeeding women in Canada to help increase their milk supply. Many have described it as a “miracle drug” that has helped them feed their babies. But, as a CBC investigation has found, some also believe that withdrawal after they stopped taking the drug left them in severe psychological distress — and even, in some cases, suicidal. Today, Tara Carman — a senior reporter with CBC’s national investigative unit — walks us through her team’s findings. **UPDATE** - An earlier version of this episode said 120 million prescriptions for domperidone were filled in 2020, based on data from Health Canada. After publication of this story, Health Canada corrected their publicly available data to reflect that 1.7 million prescriptions were filled in that year, representing around 120 million tablets. This episode now reflects that change.

In the Dragon's Den, a simple pitch can lead to a life-changing connection. Watch new episodes of Dragon's Den free on CBC Gem, brought to you in part by National Angel Capital Organization, empowering Canada's entrepreneurs through angel investment and industry connections. This is a CBC Podcast. Hi, I am Allie Janes, in for Jamie Poisson. So just a note before we begin, this episode contains descriptions of suicidal ideation. Mounting panic attacks out of nowhere, waking me up at night, just I would fall asleep for maybe an hour or two and I would wake up completely panicked, totally revved, hearts beating, I'm sweating, it's like really a whole other world of anxiety than I had

ever, ever experienced. When Jamie Robinson's daughter Emma was eight months old, Robinson suddenly started having panic attacks, sometimes six or seven a day. She had thoughts about punching herself in the face or taking her own life. And at some point, she stopped feeling a connection to her own daughter. Having this reoccurring thought that she had been replaced, that this was not my baby, that this was maybe even a robot baby because there was no emotional engagement from my side. And the emotions that rush into that space, the guilt, the feeling of panic, like, am I a bad mom? Am I losing my mind? What's going on? Robinson's doctor diagnosed her

with postpartum depression. But her psychologist started to wonder if something else was going on. If what Robinson was really experiencing was withdrawal from a drug she had been taking for breastfeeding. It's called Domperidone, and it's a gastrointestinal medication. But it's often prescribed to new moms in Canada to help boost lactation, even though it's not approved for that use. And even though the drug is banned in the U.S. Robinson says that when the Herzl Goldfarb Clinic in Montreal prescribed the medication to her, she didn't realize what she was getting into. I didn't understand that the medication that was being prescribed to me

had not been researched as a treatment for the problem I was having. And I didn't understand that that also meant that there was not research on potential side effects that I might experience taking it long term. Two CBC investigative journalists, Tara Carmen and Chelsea Gomez, began looking into this. And they spoke with nine women in Canada, the US and Australia, who say they had similar symptoms to Robinson when they tried to go off Domperidone. And it turns out some experts also have concerns. Tara Carmen is here with me now to explain what they found. Hi, Tara. Thanks so much for coming on FrontBurner. Thanks for having me, Allie.

So for starters, just explain to me what this drug is. So both what its official use is and why so many people who are breastfeeding are using it. Sure. So the drug is called Domperidone. eating or using it? Sure. So the drug is called Domperidone and its intended purpose is as a gastrointestinal drug. It's used to kind of speed up digestion. And that is the purpose that Health Canada has approved it for. Now, it's also prescribed off-label. That means that it's prescribed for a purpose other than the one that it has been authorized for, because it has a side effect of inducing lactation sometimes. And so it is prescribed many thousands of times a year in Canada for women who are struggling to produce

enough breast milk in order to enable them to feed their babies. Okay. And I mean, just to be clear, are doctors in Canada allowed to prescribe a drug to patients for an off-label use like that? They are. And in fact, it's really common for drugs to be prescribed for like a side effect, basically, something other than what they're authorized for. That in and of itself is not controversial. Okay. Okay. And I mean, you know, so obviously we're going to talk a bunch about that off-label use today. I mean, I have heard, even from friends, I've heard this described as like a kind of miracle drug for breastfeeding. Exactly. And that is how it's described. A lot of it is happening in Facebook groups for mothers who are having trouble breastfeeding. It's described exactly,

as you say, as a miracle drug, as something that they were prescribed and they took when other techniques weren't working for them. And suddenly, you know, they were able to feed their babies. And that was such a relief because many women want to breastfeed. We all know all the information that's out there about all of the benefits of breastfeeding for both mothers and babies. And so for them to be able to, you know, take this medication and produce milk when they couldn't before was really very helpful to a lot of the women who took it. And do we have a sense of how commonly it's being used for this purpose in Canada?

No, we don't. We only know bulk prescription numbers. Now, Health Canada says that in 2020, there were 1.7 million prescriptions filled for Domperidone, representing around 120 million tablets. We don't know how many of them were for its on-label use and how many of them were for lactation. We wanted to get a better sense of that. So we got partial data from four provinces, from BC, Saskatchewan, Manitoba, and Quebec, over about a 20-year period. It's incomplete. But when we dug into that, we found that three-quarters of the people prescribed in those provinces were women in their childbearing years. Okay. And obviously, just to be clear, like we don't know if these women in their childbearing years were prescribed it. Like many of them could have just been people who had gastrointestinal issues. Like we don't know if they were being prescribed it for breastfeeding. Exactly. The data does not give the reason people were being prescribed. So that is something that we don't

know. Right. Okay. And so what does Health Canada say about Domperidone? Like, have they identified concerns with it? They have. So they've actually issued three warnings about Domperidone most recently in January. And this is mainly due to concerns about its potential effects on the heart. So Domperidone has been shown to increase the length between heartbeats, and it's also been linked to sudden cardiac death. So the guidance from Health Canada says that Domperidone should be taken at a maximum dose of 30 milligrams per day for the shortest duration possible. And in the U.S., actually, Domperidone hasn't been authorized for any purpose because the FDA says that it's too dangerous due to these cardiac side effects. So it's not authorized for any human use in the United States. And so how did it become so common for Domperidone to be prescribed as a lactation aid in Canada? Well, a lot of that is due to the work of a pediatrician who is extremely well known in breastfeeding circles.

He's in Toronto. His name is Dr. Jack Newman. And if you are a mother who is breastfeeding, thinking about it, and you're searching resources for that on the internet, it's very likely that you will come across Dr. Newman's information about breastfeeding. And one of the things that he talks about in his books and on his social media pages and on his website is Domperidone and how it can be used to stimulate lactation. We use it for a significant number of reasons, including the baby not getting enough milk. But even if the baby is refusing to latch on, for example, more milk helps that baby get to the breast, even if the mother is not producing enough milk. So he has written protocols about how to use it, how much to use it, how to come off of

it, and even co-authored instructions for if you're adopting a baby, for example, how to use Domperidone to stimulate lactation when you haven't been pregnant so you can then breastfeed your adopted baby. Okay. And I mean, just to be super clear, Dr. Newman is like very much revered, including among experts in breastfeeding, right? Like not just on online, but among professionals as well. Absolutely. La Leche League, which is a well-known breastfeeding organization with chapters in many countries around the world, they, you know, link to the resources of Dr. Newman's. And yes, lots of doctors as well have found these protocols to be helpful, for sure. Okay, okay. And so what does Dr. Newman see as the role of Domperidone in lactation? Like, would this be, you know, kind of a first line of treatment for people who are struggling with

breastfeeding? No, he was pretty clear about that. We did sit down for an extended interview with Dr. Newman and he explained to us, he has a clinic in Toronto, it's called the International Breastfeeding Centre. And the way he explained to us what usually happens is that clients will see a lactation consultant. We don't just hand out Domperidone. We have lactation consultants who help mothers with how the baby latches on. We have the lactation consultants who teach the mother, how do I know the baby is actually getting milk from the breast? Because the baby's not necessarily getting milk just because they're on the breast and sucking. They'll teach them about things like breast compressions and alternative techniques to stimulate lactation. He says Domperidone is useful if these things aren't as successful. And he actually said in our interview that he wishes Domperidone wasn't necessary.

He thinks that women should be better supported to breastfeed when they leave the hospital. Right. Okay. And what kind of doses does he recommend for help with lactation? So Health Canada's recommendation, again, is a maximum of 30 milligrams per day for gastrointestinal treatments. So for lactation, Dr. Newman says that that is not enough. That dose will not be effective. He typically starts his patients at three times that dose, so 90 milligrams a day, and he will increase from there if needed. The dose of Domperidone that Health Canada the dose of Domperidone that Health Canada recommends, it's not a you-must-do-this, is useless. It's not going to work.

And so we, with experience, know that three tablets three times a day, and sometimes we go higher than that, actually helps. And it helps in the majority of mothers. Now, there's no such thing as... And he says that it's safe to stay on as long as a woman is breastfeeding. And so how did you and your colleague Chelsea Gomez start to think that, you know, there might be some concerns to look into with this drug? So we put out a call out for another story we were doing on maternal health a couple of months ago, inviting women who had had close calls to get in touch with us. And through that call out, two women reached out who had, they'd had some disturbing experiences trying to taper off Dom Peridone. And so we started doing some research into like how common of an experience

this was, and we found several other stories. Okay. And so let's talk about some of those other stories now. You know, in the intro, we heard some of this really heartbreaking story of this woman, Jamie Robinson in Montreal. And I know you guys also spoke to another woman named Emily Matriel in Michigan. So let's talk a bit about her story. And why don't we start with the fact that she's in the US, right, where Domperidone is not legal. So how did she get this medication? Yeah, that's really interesting. So Emily's breast milk supply dropped off suddenly when her son was three months old. And so she was faced with this hungry baby who wasn't getting enough milk at the breast and refusing to take a bottle. She went to a lactation consultant,

to take a bottle. She went to a lactation consultant, but the techniques didn't help her. So she went online to mom's groups and said, hey, you know, has anyone else, you know, had this happen to them? And one of the people she met in these groups suggested that she try Domperidone. I didn't know how to find it because it wasn't available in the U.S. And that's when I saw that people were either getting it from overseas or getting it from a doctor in Canada, Dr. Newman. And I thought, well, that sounds safe. I will reach out to the doctor and kind of see how this goes. So that's when I kind of reached out. And so she reached out to the clinic in Toronto and got an appointment with the lactation consultant at that clinic

the next day. Okay. Okay. And so, I mean, from the point where she has this consultation, how did she actually get this drug from Dr. Newman's clinic? Right. So she spoke with a lactation consultant in a virtual consultation. And then the lactation consultant presented her case to Dr. Newman. He prescribed Domperidone at a dose of 90 milligrams per day and sent the prescription to a pharmacy in Vancouver, which then shipped the medication to Matriel in Michigan. We know this because we've seen the emails that document these interactions. Okay. Okay. And so, you know, she was on this drug, obviously, for a while. And then what happened? When did she decide to go off of it? And what happened? When did she decide to go off of it?

Yeah, so she was at first prescribed 90 milligrams. And then when that didn't result in any change, they increased the dose to 120 milligrams. And at that dose, she started producing quite a lot of milk, so much so that three months later, she had an oversupply. And she had a freezer full of milk and she was pumping all the time. And she was ready to be finished breastfeeding at that point. So she decided to go off the drug. Now, Emily, like Jamie, was told to wean off the drug slowly, not stop cold turkey, so that the milk supply wouldn't be disrupted. And Emily was also warned that she could experience some anxiety if she stopped too quickly. So she did taper slowly at first, and then, you know, she was just eager to be finished with pumping, and

she decided she wanted to stop breastfeeding, So she wasn't worried about her milk supply drying up. She thought, you know, she's experienced anxiety before she can handle a little anxiety. So she stopped taking the pills. Okay. And so what happened after she stopped taking them? Well, it started out a couple of days later. She had really dry eyes and hot flashes. But then things escalated. She had extreme anxiety. She had panic attacks.

She couldn't sleep. She didn't want to sit still, but she also didn't want to move. And this became so debilitating that she lost the ability to take care of her son. She just started spending days in bed, not wanting to get up. She couldn't care for her son. And so the family actually had to sell their house and move in with her parents so that her mother could look after her son. This went on for months.

It wasn't getting better. She didn't know if it was ever going to get better. And she started to feel like a burden to her family. And then I had a suicide attempt around shortly after my son's birthday, just son's birthday, just knowing that this isn't who I am or the life I've worked towards, and that if I have to go on like this, I don't want to be here. I mean, Mitriel was in contact with Dr. Newman as she was experiencing these symptoms. What did he say about her case? I mean, Mitriel was in contact with Dr. Newman as she was experiencing these symptoms. What did he say about her case?

So Dr. Newman told her essentially she had two options. One was to take anti-anxiety medication that was recommended by her American doctors. And the other one was to go back onto Domperidone and wean off more slowly. Emily had reached out to doctors in the U.S., you know, trying to get answers about what was happening to her. But this is a really important issue here, Ali, because Domperidone isn't authorized for use in the U.S., American doctors aren't familiar with it. They don't know what it is, and they don't know how it can function. And so when Emily went to doctors there, you know, they told her, okay, well, you're having postpartum depression or you're having anxiety,

and, you know, you should take some anxiety medication. But at that point, Emily didn't want to be on any other medication. And she did try going back on to Domperidone back at a higher dose, but it didn't help her. In the Dragon's Den, a simple pitch can lead to a life-changing connection. Watch new episodes of Dragon's Den free on CBC Gem. Brought to you in part by National Angel Capital Organization, empowering Canada's entrepreneurs through angel investment and industry connections. Hi, it's Ramit Sethi here.

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In my new book and podcast, Money for Couples, I help you and your partner create a financial vision together. To listen to this podcast, just search for Money for Couples. So we've been talking about these very severe psychological symptoms that the women that you spoke to believe are linked to their withdrawal from Domperidone. I mean, you also mentioned that they heard from other women online similar stories and they thought that it was linked. But just to be extremely clear here, we don't actually know if the symptoms that they experienced are actually related to the drug, right? Like in some cases, we don't know that they're not

experiencing this because of like postpartum depression, for example. We don't know that for absolute sure. But there are researchers who have studied this who have their doubts that this is postpartum depression. And in fact, what you just said is what women are told, you know, when they seek medical attention is that, yeah, what you're seeing is postpartum depression. So one of the researchers who studied this is Caitlin Crutch, and she is at the Infant Risk Center at the Texas Tech University Health Sciences Center School of Medicine. They study breast milk. And they were getting calls from American women in crisis, mental health crisis, trying to come off this drug. And she was hearing stories like this over and over. And so they published last month in a peer-reviewed journal, the Journal of Breastfeeding Medicine,

they published three case studies about women who go through this. And what they noted there was that the symptoms tended to appear when women stopped taking the drug and disappear or wane when they went back onto the drug. So, you know, they were seeing that causal relationship there. And one of the women in these case studies was not someone who was pregnant. She was someone who took Domperidone to stimulate lactation in order to breastfeed an adopted baby. So, you know, postpartum depression doesn't happen to people who haven't been pregnant. Right, right. So, I mean, certainly in that case, it couldn't be postpartum. Now, you, of course, as you mentioned earlier, you interviewed Dr. Jack Newman for this story. So what was his response to these allegations from women who say that their psychological symptoms were caused by withdrawal from Domperidone?

So he said that those kinds of symptoms are rare and that they don't happen if women follow his instructions to slowly taper off the drug. He did note that Domperidone can act as an antidepressant. These mothers have been on the Domperidone sometimes for several months. sometimes for several months. And when they go off it, especially if they go off it quickly, the symptoms of maybe what is really postpartum depression rather than the effect of the Domperidone. And, you know, that is what can cause these symptoms. Okay, okay.

And, I mean, you just noted that he says he does tell patients to taper slowly off of this drug. And also, I mean, that is something that his website warns about too, right? Yes, exactly. His website does warn women to taper slowly. We reviewed the documentation that he provides to women who are prescribed Domperidone. It does say to taper off slowly. But the key point here, Allie, is that the reason it says to taper off slowly is mainly so that the breast milk supply doesn't go away suddenly and leave the baby hungry. And that was the main reason that both Jamie and Emily were told to taper.

And neither of them were worried about that. So they kind of disregarded, you know, that information. Dr. Newman's website does say, you know, anxiety or depression can result. But he says that it's likely not linked to Domperidone. Okay. And we should also just clarify that Jamie Robinson was not prescribed this by Dr. Newman's clinic. She was prescribed by a doctor in Montreal, so totally separate from his clinic. Now, as we mentioned earlier, the FDA in the U.S. considers this a very dangerous drug for its potential cardiac impact, and it's not authorized for human use there.

So what was Dr. Newman's response to that? Dr. Newman says that he believes concerns from regulators such as the FDA are generally overblown. He says he's been prescribing Domperidone safely for decades to thousands of women, and they've never had a report of a serious cardiac side effect. Well, the FDA has said a lot of rubbish in the years. They're wrong about Domperidone to say it's a particularly dangerous drug. I mean, you know, antibiotics can be dangerous too. Allergic reactions.

You know, there's no such thing as a drug that hasn't killed somebody. We did review the Health Canada Adverse Drug Reaction Database and we did find entries in there that people had reported of cardiac incidents, including cardiac death, in which Domperidone was listed as a suspect drug. That's not to say that it for sure caused it, but it was in there as, you know, one of the things. So, I mean, something that I've been thinking about as we've been talking is, you know, as you said near the start of this conversation, like we know that there are many, many benefits to breastfeeding. I mean, both for the baby and for the breastfeeding parent. Right. But I mean, something that you do hear sometimes, too, is that moms feel a really intense pressure to breastfeed.

You know, and I mean, this is something that we know. Certainly I know from my mom friends like breastfeeding is hard. Right. And they feel shame if if they don't or if they struggle with it. And I'm wondering if that's something that came up in your interviews for this. Absolutely, Allie. That pressure to breastfeed is a very real thing that many mothers feel. Jamie in Montreal talked to us about this a lot. She said she had learned a lot about the importance of breastfeeding, both for the mother and the baby. And here she had this, you know, new daughter, you know, her first child, and she didn't have enough milk to feed her

daughter. And she said that she felt like a failure. Honestly, I felt like such a failure to be giving my daughter formula. And looking back, it's like, I don't know why I bought into this messaging around breastfeeding as heavily as I did or what exactly was going on for me and looking back I just wish that there was like some more measured conversation around like oh like what do you what's the the reality for women because not everyone can breastfeed and not every child can latch. And that was like... And so how are Jamie Robinson and Emily Matriel now? Well, I'm happy to report to Ellie that their lives are both getting back to normal.

So Jamie has actually started compiling stories of people who have had similar experiences to her when they stopped taking Domperidone and putting them on a website just so that, you know, there's more information out there. Emily and her family have moved out of her parents' house. They're living back in their own apartment now. And she's starting to feel good about things like taking exercising classes again. Things are starting to get back to normal for her too. And she said what helped her was hearing similar stories from other women and knowing that she wasn't alone

in what she was going through. So I guess that's been the biggest thing, is just wanting to get my story out there and try to help people and kind of make them more aware that it might not just be a drop in breast milk and some anxiety, it could be a lot more. Tara, thank you so much for this story. Thanks for having me. All right, that is all for today. I'm Allie Janes, in for Jamiebc.ca slash podcasts.