Turns out the viral ‘Sleepy Girl Mocktail’ is backed by science. Should you try it?
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Many of us wish we could get a better night’s sleep. Wouldn’t it be great if it was as easy as a mocktail before bed?
That’s what the latest viral trend might have us believe. The “Sleepy Girl Mocktail” is a mix of tart cherry juice, powdered magnesium supplement and soda water. TikTok videos featuring the concoction have garnered hundreds of thousands of views. But, what does the science say? Do these ingredients actually help us sleep?
Tart cherry juice
There is research to show including tart cherry juice in your diet improves overall sleep. Clinical trials show tart cherry juice increases sleep quality and quantity, as well as a lessening insomnia symptoms (compared to a placebo). This could be due to the presence of melatonin, a sleep-promoting hormone, in cherries.
Tart cherry varieties such as Jerte Valley or Montmorency have the highest concentration of melatonin (approximately 0.135 micrograms of melatonin per 100g of cherry juice). Over the counter melatonin supplements can range from 0.5 milligram to over 100 milligrams, with research suggesting those beginning to take melatonin start with a dose of 0.5–2 milligrams to see an improvement in sleep.
Melatonin naturally occurs in our bodies. Our body clock promotes the release of melatonin in the evening to help us sleep, specifically in the two hours before our natural bedtime.
If we want to increase our melatonin intake with external sources, such as cherries, then we should be timing our intake with our natural increase in melatonin. Supplementing melatonin too close to bed will mean we may not get the sleep-promoting benefits in time to get off to sleep easily. Taking melatonin too late may even harm our long-term sleep health by sending the message to our body clock to delay the release of melatonin until later in the evening.
Magnesium – but how much?
Magnesium also works to promote melatonin, and magnesium supplements have been shown to improve sleep outcomes.
However, results vary depending on the amount of magnesium people take. And we don’t yet have the answers on the best dose of magnesium for sleep benefits.
We do know magnesium plays a vital role in energy production and bone development, making it an important daily nutrient for our diets. Foods rich in magnesium include wheat cereal or bread, almonds, cashews, pumpkin seeds, spinach, artichokes, green beans, soy milk and dark chocolate.
Bubbly water
Soda water serves as the base of the drink, rather than a pathway to better sleep. And bubbly water may make the mix more palatable. It is important to keep in mind that drinking fluids close to bedtime can be disruptive to our sleep as it might lead to waking during the night to urinate.
Healthy sleep recommendations include avoiding water intake in the two hours before bed. Having carbonated beverages too close to bed can also trigger digestive symptoms such as bloating, gassiness and reflux during the night.
Bottoms up?
Overall, there is evidence to support trying out the Sleepy Girl Mocktail to see if it improves sleep, however there are some key things to remember:
timing: to get the benefits of this drink, avoid having it too close to bed. Aim to have it two hours before your usual bedtime and avoid fluids after this time
consistency: no drink is going to be an immediate cure for poor sleep. However, this recipe could help promote sleep if used strategically (at the right time) and consistently as part of a balanced diet. It may also introduce a calming evening routine that helps your brain relax and signals it’s time for bed
- maximum magnesium: be mindful of the amount of magnesium you are consuming. While there are many health benefits to magnesium, the recommended daily maximum amounts are 420mg for adult males and 320mg for adult females. Exceeding the maximum can lead to low blood pressure, respiratory distress, stomach problems, muscle weakness and mood problems
sugar: in some of the TikTok recipes sugar (as flavoured sodas, syrups or lollies) is added to the drink. While this may help hide the taste of the tart cherry juice, the consumption of sugar too close to bed may make it more difficult to get to sleep. And sugar in the evening raises blood sugar levels at a time when our body is not primed to be processing sugar. Long term, this can increase our risk of diabetes
sleep environment: follow good sleep hygiene practices including keeping a consistent bedtime and wake time, a wind-down routine before bed, avoiding electronic device use like phones or laptops in bed, and avoiding bright light in the evening. Bright light works to suppress our melatonin levels in the evening and make us more alert.
What about other drinks?
Other common evening beverages include herbal tisanes or teas, hot chocolate, or warm milk.
Milk can be especially beneficial for sleep, as it contains the amino acid tryptophan, which can promote melatonin production. Again, it is important to also consider the timing of these drinks and to avoid any caffeine in tea and too much chocolate too close to bedtime, as this can make us more alert rather than sleepy.
Getting enough sleep is crucial to our health and wellbeing. If you have tried multiple strategies to improve your sleep and things are not getting better, it may be time to seek professional advice, such as from a GP.
Charlotte Gupta, Postdoctoral research fellow, CQUniversity Australia
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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PS, We Love You
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PS, we love you. With good reason!
There are nearly 20,000 studies on PS listed on PubMed alone, and its established benefits include:
- significantly improving memory
- potential reversal (!) of neurodegeneration
- reduction of stress activation
- improvement in exercise capacity
- it even helps avoid rejection of medical implants
We’ll explore some of these studies and give an overview of how PS does what it does. Just like the (otherwise unrelated) l-theanine we talked about a couple of weeks ago, it does do a lot of things.
PS = Cow Brain?!
Let’s first address a concern. You may have heard something along the lines of “hey, isn’t PS made from cow brain, and isn’t that Very Bad™ for humans, mad cow disease and all?”. The short answer is:
Firstly: ingesting cow brain tissue is indeed generally considered Very Bad™ for humans, on account of the potential for transmission of Bovine Spongiform Encephalopathy (BSE) resulting in its human equivalent, Creutzfeldt–Jakob Disease (CJD), whose unpleasantries are beyond the scope of this newsletter.
Secondly (and more pleasantly): whilst PS can be derived from bovine brain tissue, most PS supplements these days derive from soy—or sometimes sunflower lecithin. Check labels if unsure.
Using PS to Improve Other Treatments
In the human body, the question of tolerance brings us a paradox (not the tolerance paradox, important as that may also be): we must build and maintain a strong immune system capable of quickly adapting to new things, and then when we need medicines (or even supplements), we need our body to not build tolerance of them, for them to continue having an effect.
So, we’re going to look at a very hot-off-the-press study (Feb 2023), that found PS to “mediate oral tolerance”, which means that it helps things (medications, supplements etc.) that we take orally and want to keep working, keep working.
In the scientists’ own words (we love scientists’ own words because they haven’t been distorted by the popular press)…
❝This immunotherapy has been shown to prevent/reduce immune response against life-saving protein-based therapies, food allergens, autoantigens, and the antigenic viral capsid peptide commonly used in gene therapy, suggesting a broad spectrum of potential clinical applications. Given the good safety profile of PS together with the ease of administration, oral tolerance achieved with PS-based nanoparticles has a very promising therapeutic impact.❞
Nguyen et al, Feb 2023
In other words, to parse those two very long sentences into two shorter bullet points:
- It allows a lot of important treatments to continue working—treatments that the body would otherwise counteract
- It is very safe—and won’t harm the normal function of your immune system at large
This is also very consistent with one of the benefits we mentioned up top—PS helps avoid rejection of implants, something that can be a huge difference to health-related quality of life (HRQoL), never mind sometimes life itself!
What is PS Anyways, and How Does It Work?
Phosphatidylserine is a phospholipid, a kind of lipid, found in cell membranes. More importantly:
It’s a signalling agent, mainly for apoptosis, which in lay terms means: it tells cells when it’s time to die.
Cellular death sounds like a bad thing, but prompt and efficient cellular apoptosis (death) and resultant prompt and efficient autophagy (recycling) reduce the risk of your body making mistakes when creating new cells from old cells.
Think about photocopying:
- Situation A: You have a document, and you want to copy it. If you copy it before it gets messed up, your copy will look almost, if not exactly, like the original. It’ll be super easy to read.
- Situation B: You have a document, and you want to copy it, but you delay doing so for so long that the original is all scuffed and creased and has a coffee stain on it. These unwanted changes will get copied onto the new document, and any copy made of that copy will keep the problems too. It gets worse and worse each time.
So, using this over-simplifier analogy, the speed of ‘copying’ is a major factor in cellular aging. The sooner cells are copied, before something gets damaged, the better the copy will be.
So you really, really want to have enough PS (our bodies make it too, by the way) to signal promptly to a cell when its time is up.
You do not want cells soldiering on until they’re the biological equivalent of that crumpled up, coffee-stained sheet of paper.
Little wonder, then, that PS’ most commonly-sought benefit when it comes to supplementation is to help avoid age-related neurodegeneration (most notably, memory loss)!
Keeping the cells young means keeping the brain young!
PS’s role as a signalling agent doesn’t end there—it also has a lot to say to a wide variety of the body’s immunological cells, helping them know what needs to happen to what. Some things should be immediately eaten and recycled; other things need more extreme measures applied to them first, and yet other things need to be ignored, and so forth.
You can read more about that in Elsevier’s publication if you’re curious 🙂
Wow, what a ride today’s newsletter has been! We started at paracetamoxyfrusebendroneomycin, and got down to the nitty gritty with a bunch of hopefully digestible science!
We love feedback, so please let us know if we’re striking the balance right, and/or if you’d like to see more or less of something—there’s a feedback widget at the bottom of this email!
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The Meds That Impair Decision-Making
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Impairment to cognitive function is often comorbid with Parkinson’s disease. That is to say: it’s not a symptom of Parkinson’s, but it often occurs in the same people. This may seem natural: after all, both are strongly associated with aging.
However, recent (last month, at time of writing) research has brought to light a very specific way in which medication for Parkinson’s may impair the ability to make sound decisions.
Obviously, this is a big deal, because it can affect healthcare decisions, financial decisions, and more—greatly impacting quality of life.
See also: Age-related differences in financial decision-making and social influence
(in which older people were found more likely to be influenced by the impulsive financial preferences of others than their younger counterparts, when other factors are controlled for)
As for how this pans out when it comes to Parkinson’s meds…
Pramipexole (PPX)
This drug can, due to an overlap in molecular shape, mimic dopamine in the brains of people who don’t have enough—such as those with Parkinson’s disease. This (as you might expect) helps alleviate Parkinson’s symptoms.
However, researchers found that mice treated with PPX and given a touch-screen based gambling game picked the high-risk, high reward option much more often. In the hopes of winning strawberry milkshake (the reward), they got themselves subjected to a lot of blindingly-bright flashing lights (the risk, to which untreated mice were much more averse, as this is very stressful for a mouse).
You may be wondering: did the mice have Parkinson’s?
The answer: kind of; they had been subjected to injections with 6-hydroxydopamine, which damages dopamine-producing neurons similarly to Parkinson’s.
This result was somewhat surprising, because one would expect that a mouse whose depleted dopamine was being mimicked by a stand-in (thus, doing much of the job of dopamine) would be less swayed by the allure of gambling (a high-dopamine activity), since gambling is typically most attractive to those who are desperate to find a crumb of dopamine somewhere.
They did find out why this happened, by the way, the PPX hyperactivated the external globus pallidus (also called GPe, and notwithstanding the name, this is located deep inside the brain). Chemically inhibiting this area of the brain reduced the risk-taking activity of the mice.
This has important implications for Parkinson’s patients, because:
- on an individual level, it means this is a side effect of PPX to be aware of
- on a research-and-development level, it means drugs need to be developed that specifically target the GPe, to avoid/mitigate this side effect.
You can read the study in full here:
Don’t want to get Parkinson’s in the first place?
While nothing is a magic bullet, there are things that can greatly increase or decrease Parkinson’s risk. Here’s a big one, as found recently (last week, at the time of writing):
Air Pollution and Parkinson’s Disease in a Population-Based Study
Also: knowing about its onset sooner rather than later is scary, but beneficial. So, with that in mind…
Recognize The Early Symptoms Of Parkinson’s Disease
Finally, because Parkinson’s disease is theorized to be caused by a dysfunction of alpha-synuclein clearance (much like the dysfunction of beta-amyloid clearance, in the case of Alzheimer’s disease), this means that having a healthy glymphatic system (glial cells doing the same clean-up job as the lymphatic system, but in the brain) is critical:
How To Clean Your Brain (Glymphatic Health Primer)
Take care!
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What Does Lion’s Mane Actually Do, Anyway?
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Peripheral neuropathy (and what can be done about it)
Peripheral neuropathy is nerve damage, usually of the extremities. It can be caused by such things as:
- Diabetes
- Alcoholism
- Infection
- Injury
The manifestations can be different:
- In the case of diabetes, it’s also called diabetic neuropathy, and almost always affects the feet first.
- In the case of alcoholism, it is more generalized, but tends towards affecting the extremities first.
- In the case of infection, a lot depends on the nature of the infection and the body’s response.
- In the case of injury, it’ll naturally be the injured part, or a little “downstream” of the injured part.
- This could be the case of a single traumatic injury (e.g. hand got trapped in a slammed door)
This could be the case of a repetitive injury (carpal tunnel syndrome is a kind of peripheral neuropathy, and is usually caused by consistent misalignment of the carpal tunnel, the aperture through which a bundle of nerves make their way from the forearm to the hand)
Prevention is better than cure
If you already have peripheral neuropathy, don’t worry, we’ll get to that. But, if you can, prevention is better than cure. This means:
- Diabetes: if you can, avoid. This may seem like no-brainer advice, but it’s often something people don’t think about until hitting a pre-diabetic stage. Obviously, if you are Type 1 Diabetic, you don’t have this luxury. But in any case, whatever your current status, take care of your blood sugars as best you can, so that your blood can take care of you (and your nerves) in turn. You might want to check out our previous main feature about this:
- Alcoholism: obviously avoid, if you can. You might like this previous edition of 10almonds addressing this:
- Infection: this is so varied that one-liner advice is really just “try to look after your immune health”.
- We’ll do a main feature on this soon!
- Injury: obviously, try to be careful. But that goes for the more insidious version too! For example, if you spend a lot of time at your computer, consider an ergonomic mouse and keyboard.
- There are many kinds available, so read reviews, but here’s an example product on Amazon
Writer’s note: as you might guess, I spend a lot of time at my computer, and a lot of that time, writing. I additionally spend a lot of time reading. I also have assorted old injuries from my more exciting life long ago. Because of this, it’s been an investment in my health to have:
A standing desk
A vertical ergonomic mouse
An ergonomic split keyboard
A Kindle*
*Far lighter and more ergonomic than paper books. Don’t get me wrong, I’m writing to you from a room that also contains about a thousand paper books and I dearly love those too, but more often than not, I read on my e-reader for comfort and ease.
If you already have peripheral neuropathy
Most advice popular on the Internet is just about pain management, but what if we want to treat the cause rather than the symptom?
Let’s look at the things commonly suggested: try ice, try heat, try acupuncture, try spicy rubs (from brand names like Tiger Balm, to home-made chilli ointments), try meditation, try a warm bath, try massage.
And, all of these are good options; do you see what they have in common?
It’s about blood flow. And that’s why they can help even in the case of peripheral neuropathy that’s not painful (it can also manifest as numbness, and/or tingling sensations).
By getting the blood flowing nicely through the affected body part, the blood can nourish the nerves and help them function correctly. This is, in effect, the opposite of what the causes of peripheral neuropathy do.
But also don’t forget: rest
- Put your feet up (literally! But we’re talking horizontal here, not elevated past the height of your heart)
- Rest that weary wrist that has carpal tunnel syndrome (again, resting it flat, so your hand position is aligned with your forearm, so the nerves between are not kinked)
- Use a brace if necessary to help the affected part stay aligned correctly
- You can get made-for-purpose wrist and ankle braces—you can also get versions that are made for administering hot/cold therapy, too. That’s just an example product linked that we can recommend; by all means read reviews and choose for yourself, though. Try them and see what helps.
One more top tip
We did a feature not long back on lion’s mane mushroom, and it’s single most well-established, well-researched, well-evidenced, completely uncontested benefit is that it aids peripheral neurogenesis, that is to say, the regrowth and healing of the peripheral nervous system.
So you might want to check that out:
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How influencers and content creators discuss birth control on social media: What research shows
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News articles in recent weeks have documented the spread of misinformation about hormonal birth control methods on popular social media platforms like TikTok, YouTube and X, formerly called Twitter. Influencers with large and small followings are sharing unsubstantiated claims about the side effects of contraceptives, while directly or indirectly encouraging others to stop using them.
This trend has not escaped researchers, who for several years have been investigating what people who can get pregnant are posting on social media platforms about hormonal and non-hormonal birth control methods. Understanding the drivers of these trends is important because they have implications for policy and patient care, according to researchers. Some worry that during the post-Dobbs era, when there are continued strikes against reproductive rights in the U.S., misinformation about birth control on social media could have a negative influence on contraceptive preferences — potentially leading to more unwanted pregnancies.
More than 90% of women of reproductive age have used at least one contraceptive method, according to a 2023 report by the U.S. National Center for Health Statistics. However, the report also finds that the use of male condoms and withdrawal methods increased between 2006 and 2019, while the use of the birth control pill decreased. Non-hormonal contraception methods, including condoms, spermicides, withdrawal and menstrual cycle tracking, are 10% or less effective than hormonal contraceptives. The only exceptions are surgical sterilization and the copper intrauterine device.
To be sure, not all birth control-related content posted on social media platforms is negative, studies show. Health care professionals are sharing educational material with a high rate of engagement and non-health care professional users share their positive experiences with the birth control methods they use.
But as you will see in the studies curated below, researchers also find that social media users, including influencers, share inaccurate information about hormonal contraceptives on various social media platforms, discuss their discontinuation of birth control in favor of non-hormonal methods and engage in unsubstantiated fear-mongering of hormonal contraceptives.
Researchers also have learned that the content posted on social media platforms has changed in tone over time, mirroring the shift in the national political discourse.
In a 2021 study published in the American Journal of Obstetrics & Gynecology, researchers analyzed more than 800,000 English-language tweets mentioning at least one contraceptive method between March 2006, when Twitter was founded, and December 2019. They coded the sentiment of tweets as positive, neutral or negative.
“What we found over time was that the number of neutral tweets went down for each and every one of the birth control methods, and people became more polarized with regards to how they talk on these social media platforms over those 13 years,” says study co-author Dr. Deborah Bartz, an OB-GYN at Brigham and Women’s Hospital with expertise in complex family planning and an associate professor at Harvard Medical School.
In a February 2024 commentary in the Journal of Women’s Health, University of Delaware researchers Emily Pfender and Leah Fowler argue that ongoing dialogue about contraception on social media provides “a glimpse into public sentiment about available options” to people who can get pregnant.
The authors also note that misinformation and disinformation about hormonal contraception may have a larger effect on health disparities, especially among historically marginalized groups who may already mistrust the medical establishment.
“This may contribute to unintended pregnancy and delayed care, further widening health disparities and hindering progress toward equitable reproductive health outcomes,” Pfender and Fowler write.
Side effects
There are known side effects to hormonal birth control methods, including headaches, nausea, sore breasts and spotting. Most are mild and disappear with continued use or with switching to another method. Among hormonal contraceptives, only the Depo-Provera injection has been linked with weight gain, studies show.
But some social media influencers have spread false claims about the potential side effects of hormonal birth control methods, ranging from infertility to abortion to unattractiveness. Despite these false claims, physicians and professional organizations such as the American College of Obstetricians and Gynecologists find today’s contraceptive options safe and very effective.
“They’re about the most low-risk prescription that I give,” says Dr. Megana Dwarakanath, an adolescent medicine physician in Pittsburgh. “I always joke that if something goes wrong in someone’s life, they’re within the reproductive years, it always gets blamed on birth control.”
Dwarakanath says her young patients are most worried about two side effects: weight gain and mood. “Those are the things that they will almost always attribute to their birth control at a time that their bodies are also changing very rapidly,” she says. “Things like mental health diagnoses or personality disorders also tend to crop up during the time young people have started or have been on birth control.”
Most research on the link between oral contraceptives and cancer risk comes from observational studies, according to the National Cancer Institute. Overall, the studies have consistently shown that the risks of breast and cervical cancer are slightly increased for women who use oral contraceptives, whereas the risk of endometrial, ovarian and colorectal cancers are reduced.
The use of hormonal birth control has also been associated with an increase in the risk of developing blood clots, studies show. But that risk is not universal for everyone who takes hormonal birth control. This risk is higher for women 35 and older, those who smoke, are very overweight or have a history of cardiovascular disease. Overall, 3 to 9 out of 10,000 women who take the pill are at risk of developing blood clots within a given year. The risk for women who don’t take the pill is 1 to 5 out of 10,000.
There is no association between the pill and mood disorders, according to a large body of research, including a 2021 cohort study of nearly 740,000 young women.
It’s worth noting the dearth of research into women’s reproductive health due to chronic underfunding of women’s health research. An analysis of funding by the U.S. National Institutes of Health finds that in nearly three-quarters of the cases where a disease affects mainly one gender, the institute’s funding pattern favored males. Either the disease affected more women and was underfunded, or the disease affected more men and was overfunded, according to the 2021 study published in the Journal of Women’s Health.
Aside from underfunding, conducting robust research into the long-term effects of birth control is complex.
“Historically, people haven’t felt that it’s ethically OK to randomize people to birth control methods in large part because the outcome of unintended pregnancy is greater,” for people who are given the placebo, Bartz says.
Research on birth control misinformation on social media
Social media use is widespread among young adults. More than 90% of Americans between 18 and 29 reported ever using YouTube, while 78% said they had used Instagram, 62% used TikTok and 42% used Twitter, according to a 2023 survey of 5,733 U.S. adults by Pew Research Center.
These years overlap with the demographic of people who are most likely to use birth control. And because the use of contraceptives is less stigmatized today, people are more likely to talk with one another about their questions and concerns or share that information online.
In addition to investigating the general landscape of social media posts about birth control, researchers are also interested in the type of content influencers, who typically have 20,000 or more followers, post, because of their persuasive power over their audiences.
“When influencers disclose personal experiences and beliefs about various topics, audience members tend to form similar attitudes especially when they feel connected to the influencer,” Pfender and M. Marie Devlin write in a 2023 study published in the journal Health Communication.
Below we have curated several studies published in recent years documenting the spread of birth control misinformation on social media. The roundup is followed by a quick reference guide on female contraceptives and their actual potential side effects.
Contraceptive Content Shared on Social Media: An Analysis of Twitter
Melody Huang, et al. Contraception and Reproductive Medicine, February 2024.The study: The authors explore how contraceptive information is shared on X and understand how those posts affect women’s decisions. They analyze a random 1% of publicly available English-language tweets about reversible prescription contraceptive methods, from January 2014 and December 2019. The 4,434 analyzed tweets included at least 200 tweets per birth control method — IUDs, implants, the pill, patch and ring.
The findings: 26.7% of tweets about contraceptive methods discussed decision-making and 20.5% discussed side effects, especially the side effects of IUDs and the depot medroxyprogesterone acetate (DMPA or Depo-Provera) shot. Discussions about the pill, patch or ring prompted more discussions on logistics and adherence. About 6% of tweets explicitly requested information. Tweets about IUDs were most popular in terms of likes.
More importantly, 50.6% of the tweets were posted by contraceptive users, while only 6% came from official health or news sources. Tweets from news or journalistic sources were more frequent than tweets from a health care professional or organization.
Some tweets contained misinformation represented as facts, such as the unsubstantiated claim that IUDs can cause fertility issues. Others were outwardly misogynistic, shaming women and claiming that they wouldn’t be able to have kids because of using hormonal birth control.
One takeaway: “While Twitter may provide valuable insight, with more tweets being created by personal contraceptive users than official healthcare sources, the available information may vary in reliability. Asking patients about information from social media can help reaffirm to patients the importance of social networks in contraceptive decision-making while also addressing misconceptions to improve contraceptive counseling,” the authors write.
What Do Social Media Influencers Say About Birth Control? A Content Analysis of YouTube Vlogs About Birth Control
Emily J. Pfender and M. Marie Devlin. Health Communication, January 2023.The study: To explore what social media influencers shared on YouTube about their experiences with hormonal and non-hormonal methods of birth control, the researchers analyzed 50 vlogs posted between December 2019 and December 2021. Most of the 50 influencers were categorized on YouTube as Lifestyle (72%) and Fitness (16%). They had between 20,000 and 2.2 million subscribers each.
The findings: In total, 74% of the influencers talked about discontinuing hormonal birth control. About 44% said the main reason they were discontinuing birth control was to be more natural, while 32% said they wanted to improve their mental health and 20% were concerned about weight gain.
Forty percent of influencers mentioned using non-hormonal birth control methods such as menstrual cycle tracking, condoms, non-hormonal IUDs and the pull-out method. Twenty percent reported switching from hormonal to non-hormonal methods.
One takeaway: “Our content analysis revealed that discontinuation of hormonal birth control is commonly discussed among [social media influencers] on YouTube and sexual health information from influencers might not provide accurate educational information and tools… this is especially concerning given that social media is young adults’ primary tool for sexual health information. Future research is needed to understand the effects of SMI birth control content on sexual health behaviors,” the authors write.
Hormonal Contraceptive Side Effects and Nonhormonal Alternatives on TikTok: A Content Analysis
Emily J. Pfender, Kate Tsiandoulas, Stephanie R. Morain and Leah R. Fowler. Health Promotion Practice, January 2024.The study: The authors analyzed the content of 100 TikTok videos that used the hashtags #birthcontrolsideeffects and #nonhormonalcontraception. Their goal was to understand the types of content about side effects of hormonal and non-hormonal contraceptives on TikTok.
The findings: The videos averaged about 1 minute and garnered an average of 27,795 likes, 251 comments and 623 shares. For #birthcontrolsideeffects, 80% of the audience was 18 to 24 years old and videos with that hashtag had 43 million views worldwide as of July 7, 2023.
Thirty-two percent of the videos were by regular users (non-influencers), 26 by clinicians, 13% by health coaches and 2% by companies. Only 3% had a sponsorship disclosure and 6% included a medical disclaimer, that the person was not a doctor or was not providing medical advice.
Most of the 100 videos (71%) mentioned hormonal contraception. Among them 51% discussed unspecific hormonal contraceptives, 31% talked about the pill and 11% about hormonal IUDs. Four of the 71 creators explicitly recommended against using hormonal contraceptives.
Claims about hormonal contraceptives were mostly based on personal experience. About 25% of the creators cited no basis for their claims, 23% included outside evidence, including unspecified studies or information from the FDA insert, and 11% used a combination of personal and outside evidence.
Almost half (49%) mentioned discontinuing their hormonal contraception, with negative side effects cited as the most common reason.
The creators talked about mental health issues, weight gain, headaches, and less common risks of various cancers or chronic illness, change in personality and blood clots. They were less likely to mention the positive aspects of birth control.
About 52% of videos mentioned non-hormonal contraception, including copper IUDs and cycle tracking.
Nine of the 100 creators expressed feeling dismissed, pressured, gaslit or insufficiently informed about contraception by medical providers.
One takeaway: “Our findings support earlier work suggesting social media may fuel ‘hormonophobia,’ or negative framing and scaremongering about hormonal contraception and that this phobia is largely driven by claims of personal experience rather than scientific evidence,” the authors write. “Within these hashtag categories, TikTok creators frame their provider interactions negatively. Many indicate feeling ignored or upset after medical appointments, not sufficiently informed about contraceptive options, and pressured to use hormonal contraceptives. This finding aligns with previous social media research and among the general population, suggesting opportunities for improvements in contraceptive counseling.”
Popular Contraception Videos on TikTok: An Assessment of Content Topics
Rachel E. Stoddard, et al. Contraception, January 2024.The study: Researchers analyzed 700 English-language TikTok videos related to hormonal contraception, with a total of 1.2 billion views and 1.5 million comments, posted between October 2019 and December 2021. Their aim was to explore the types of contraception content on TikTok and to understand how the platform influences the information patients take into birth control counseling visits.
The findings: More than half of the videos (52%) were about patient experiences and how to use contraceptives. Other common topics included side effects (35%) and pregnancy (39%).
Only 19% of the videos were created by health care professionals, including midwives, physician assistants and medical doctors, although those videos garnered 41% of the total views, indicating higher engagement. While 93% of health care providers shared educational content, 23% of non-health care providers shared educational content.
One takeaway: “Our findings show an exceptional opportunity for education around contraception for young reproductive-aged individuals, given the accessibility and popularity of these videos. This may also extend to other topics around sex education and family planning, including sexually transmitted infection prevention and treatment and procuring abortion care,” the authors write.
TikTok, #IUD, and User Experience With Intrauterine Devices Reported on Social Media
Jenny Wu, Esmé Trahair, Megan Happ and Jonas Swartz. Obstetrics & Gynecology, January 2023.The study: Researchers used a web-scraping application to collect the top 100 TikTok videos tagged #IUD on April 6, 2022, based on views, comments, likes and shares. Their aim was to understand the perspectives and experiences of people with IUDs shared on TikTok. The videos had a total of 471 million views, 32 million likes and 1 million shares. Their average length was 33 seconds.
The findings: Some 89% of the creators identified as female and nearly 90% were from the United States; 37% were health care professionals; and 78% were 21 years or older.
Video types included patients’ own experiences with IUD removal (32%), educational (30%) and humorous (25%). More videos (38%) had a negative tone compared with 19% with a positive tone. The videos that portrayed negative user experiences emphasized pain and distrust of health care professionals.
Half of the videos were very accurate, while nearly a quarter were inaccurate (the authors did not use the term misinformation).
One takeaway: “The most liked #IUD videos on TikTok portray negative experiences related to pain and informed consent. Awareness of this content can help health care professionals shape education given the high prevalence of TikTok use among patients,” the authors write. “TikTok differs from other platforms because users primarily engage with an algorithmically curated feed individualized to the user’s interests and demographics.”
Types of female birth control
Most female hormonal contraceptives contain the synthetic version of natural female hormones estrogen and progesterone. They affect women’s hormone levels, preventing mature eggs from being released by the ovaries, a process that’s known as ovulation, hence, preventing a possible pregnancy.
Of the two hormones, progesterone (called progestin in synthetic form) is primarily responsible for preventing pregnancy. In addition to playing a role in preventing ovulation, progesterone inhibits sperm from penetrating through the cervix. Estrogen inhibits the development of follicles in the ovaries.
The information below is sourced from the CDC, the National Library of Medicine, the Cleveland Clinic and the Mayo Clinic.
Intrauterine contraception
Also called Long-Acting Reversible Contraception, or LARC, this method works by thickening the cervical mucus so the sperm can’t reach an egg. There are two types of IUDs: hormonal and non-hormonal.
- Levonorgestrel intrauterine system is a T-shaped device that’s placed inside the uterus by a doctor. It releases a small amount of progestin daily to prevent pregnancy. It can stay in place for 3 to 8 years. Its failure rate is 0.1% to 0.4%.
- Copper T intrauterine device is also T-shaped and is placed inside the uterus by a doctor. It does not contain hormones and can stay in place for up to 10 years. Its failure rate is 0.8%.
- Side effects: Copper IUDs may cause more painful and heavy periods, while progestin IUDs may cause irregular bleeding. In the very rare cases of pregnancy while having an IUD, there’s a greater chance of an ectopic pregnancy, which is when a fertilized egg grows outside of the uterus.
Hormonal methods
- The implant is a single, thin rod that’s inserted under the skin of the upper arm. It releases progestin over 3 years. Its failure rate is 0.1%, making it the most effective form of contraception available.
- Side effects: The most common side effect of an implant is irregular bleeding.
- The injection Depo-Provera or “shot” or “Depo” delivers progestin in the buttocks or arms every three months at the doctor’s office. Its failure rate is 4%.
- Side effects: The shot may cause irregular bleeding. The shot is also the only contraceptive that may cause weight gain. It may also be more difficult to predict when fertility returns once the shot is stopped.
- Combined oral contraceptives or “the pill” contain estrogen and progestin. They’re prescribed by a doctor. The pill has to be taken at the same time daily. The pill is not recommended for people who are older than 35 and smoke, have a history of blood clots or breast cancer. Its failure rate is 7%. Among women aged 15 to 44 who use contraception, about 25% use the pill.
- The skin patch is worn on the lower abdomen, buttocks or upper body, releasing progestin and estrogen. It is prescribed by a doctor. A new patch is used once a week for three weeks. No patch is worn for the fourth week. Its failure rate is 7%.
- Hormonal vaginal contraceptive ring releases progestin and estrogen. It’s placed inside the vagina. It is worn for three weeks and taken out on the fourth week. Its typical failure rate is 7%.
- Side effects: Contraceptives with estrogen, including the pill, the patch and the ring, increase the risk of developing blood clots.
- Progestin-only pill or “mini-pill” only has progestin and is prescribed by a doctor. It has to be taken daily at the same time. It may be a good option for women who can’t take estrogen. Its typical failure rate is 7%.
- Opill is the first over-the-counter daily oral contraceptive in the U.S., approved by the Food and Drug Administration in 2023. Opill only has progestin and like other birth control pills, it has to be taken at the same time every day. It should not be used by those who have or have had breast cancer. Its failure rate is 7%.
- Side effects: The most common side effect of progestin-only pills is irregular bleeding, although the bleeding tends to be light.
Non-hormonal birth control methods include using barriers such as a diaphragm or sponge, condoms and spermicides, withdrawal, and menstrual cycle tracking. Emergency contraception, including emergency contraception pills (the morning-after pill), is not a regular method of birth control.
Additional research studies to consider
Population Attitudes Toward Contraceptive Methods Over Time on a Social Media Platform
Allison A. Merz, et al. American Journal of Obstetrics & Gynecology, December 2020.Social Media and the Intrauterine Device: A YouTube Content Analysis
Brian T. Nguyen and Allison J. Allen. BMJ Sexual and Reproductive Health, November 2017.This article first appeared on The Journalist’s Resource and is republished here under a Creative Commons license.
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Evidence doesn’t support spinal cord stimulators for chronic back pain – and they could cause harm
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In an episode of ABC’s Four Corners this week, the use of spinal cord stimulators for chronic back pain was brought into question.
Spinal cord stimulators are devices implanted surgically which deliver electric impulses directly to the spinal cord. They’ve been used to treat people with chronic pain since the 1960s.
Their design has changed significantly over time. Early models required an external generator and invasive surgery to implant them. Current devices are fully implantable, rechargeable and can deliver a variety of electrical signals.
However, despite their long history, rigorous experimental research to test the effectiveness of spinal cord stimulators has only been conducted this century. The findings don’t support their use for treating chronic pain. In fact, data points to a significant risk of harm.
What does the evidence say?
One of the first studies used to support the effectiveness of spinal cord stimulators was published in 2005. This study looked at patients who didn’t get relief from initial spinal surgery and compared implantation of a spinal cord stimulator to a repeat of the spinal surgery.
Although it found spinal cord stimulation was the more effective intervention for chronic back pain, the fact this study compared the device to something that had already failed once is an obvious limitation.
Later studies provided more useful evidence. They compared spinal cord stimulation to non-surgical treatments or placebo devices (for example, deactivated spinal cord stimulators).
A 2023 Cochrane review of the published comparative studies found nearly all studies were restricted to short-term outcomes (weeks). And while some studies appeared to show better pain relief with active spinal cord stimulation, the benefits were small, and the evidence was uncertain.
Only one high-quality study compared spinal cord stimulation to placebo up to six months, and it showed no benefit. The review concluded the data doesn’t support the use of spinal cord stimulation for people with back pain.
What about the harms?
The experimental studies often had small numbers of participants, making any estimate of the harms of spinal cord stimulation difficult. So we need to look to other sources.
A review of adverse events reported to Australia’s Therapeutic Goods Administration found the harms can be serious. Of the 520 events reported between 2012 and 2019, 79% were considered “severe” and 13% were “life threatening”.
We don’t know exactly how many spinal cord stimulators were implanted during this period, however this surgery is done reasonably widely in Australia, particularly in the private and workers compensation sectors. In 2023, health insurance data showed more than 1,300 spinal cord stimulator procedures were carried out around the country.
In the review, around half the reported harms were due to a malfunction of the device itself (for example, fracture of the electrical lead, or the lead moved to the wrong spot in the body). The other half involved declines in people’s health such as unexplained increased pain, infection, and tears in the lining around the spinal cord.
More than 80% of the harms required at least one surgery to correct the problem. The same study reported four out of every ten spinal cord stimulators implanted were being removed.
Chronic back pain can be debilitating. CGN089/Shutterstock High costs
The cost here is considerable, with the devices alone costing tens of thousands of dollars. Adding associated hospital and medical costs, the total cost for a single procedure averages more than $A50,000. With many patients undergoing multiple repeat procedures, it’s not unusual for costs to be measured in hundreds of thousands of dollars.
Rebates from Medicare, private health funds and other insurance schemes may go towards this total, along with out-of-pocket contributions.
Insurers are uncertain of the effectiveness of spinal cord stimulators, but because their implantation is listed on the Medicare Benefits Schedule and the devices are approved for reimbursement by the government, insurers are forced to fund their use.
Industry influence
If the evidence suggests no sustained benefit over placebo, the harms are significant and the cost is high, why are spinal cord stimulators being used so commonly in Australia? In New Zealand, for example, the devices are rarely used.
Doctors who implant spinal cord stimulators in Australia are well remunerated and funding arrangements are different in New Zealand. But the main reason behind the lack of use in New Zealand is because pain specialists there are not convinced of their effectiveness.
In Australia and elsewhere, the use of spinal cord stimulators is heavily promoted by the pain specialists who implant them, and the device manufacturers, often in unison. The tactics used by the spinal cord stimulator device industry to protect profits have been compared to tactics used by the tobacco industry.
A 2023 paper describes these tactics which include flooding the scientific literature with industry-funded research, undermining unfavourable independent research, and attacking the credibility of those who raise concerns about the devices.
It’s not all bad news
Many who suffer from chronic pain may feel disillusioned after watching the Four Corners report. But it’s not all bad news. Australia happens to be home to some of the world’s top back pain researchers who are working on safe, effective therapies.
New approaches such as sensorimotor retraining, which includes reassurance and encouragement to increase patients’ activity levels, cognitive functional therapy, which targets unhelpful pain-related thinking and behaviour, and old approaches such as exercise, have recently shown benefits in robust clinical research.
If we were to remove funding for expensive, harmful and ineffective treatments, more funding could be directed towards effective ones.
Ian Harris, Professor of Orthopaedic Surgery, UNSW Sydney; Adrian C Traeger, Research Fellow, Institute for Musculoskeletal Health, University of Sydney, and Caitlin Jones, Postdoctoral Research Associate in Musculoskeletal Health, University of Sydney
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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As the U.S. Struggles With a Stillbirth Crisis, Australia Offers a Model for How to Do Better
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Series: Stillbirths:When Babies Die Before Taking Their First Breath
The U.S. has not prioritized stillbirth prevention, and American parents are losing babies even as other countries make larger strides to reduce deaths late in pregnancy.
The stillbirth of her daughter in 1999 cleaved Kristina Keneally’s life into a before and an after. It later became a catalyst for transforming how an entire country approaches stillbirths.
In a world where preventing stillbirths is typically far down the list of health care priorities, Australia — where Keneally was elected as a senator — has emerged as a global leader in the effort to lower the number of babies that die before taking their first breaths. Stillbirth prevention is embedded in the nation’s health care system, supported by its doctors, midwives and nurses, and touted by its politicians.
In 2017, funding from the Australian government established a groundbreaking center for research into stillbirths. The next year, its Senate established a committee on stillbirth research and education. By 2020, the country had adopted a national stillbirth plan, which combines the efforts of health care providers and researchers, bereaved families and advocacy groups, and lawmakers and government officials, all in the name of reducing stillbirths and supporting families. As part of that plan, researchers and advocates teamed up to launch a public awareness campaign. All told, the government has invested more than $40 million.
Meanwhile, the United States, which has a far larger population, has no national stillbirth plan, no public awareness campaign and no government-funded stillbirth research center. Indeed, the U.S. has long lagged behind Australia and other wealthy countries in a crucial measure: how fast the stillbirth rate drops each year.
According to the latest UNICEF report, the U.S. was worse than 151 countries in reducing its stillbirth rate between 2000 and 2021, cutting it by just 0.9%. That figure lands the U.S. in the company of South Sudan in Africa and doing slightly better than Turkmenistan in central Asia. During that period, Australia’s reduction rate was more than double that.
Definitions of stillbirth vary by country, and though both Australia and the U.S. mark stillbirths as the death of a fetus at 20 weeks or more of pregnancy, to fairly compare countries globally, international standards call for the use of the World Health Organization definition that defines stillbirth as a loss after 28 weeks. That puts the U.S. stillbirth rate in 2021 at 2.7 per 1,000 total births, compared with 2.4 in Australia the same year.
Every year in the United States, more than 20,000 pregnancies end in a stillbirth. Each day, roughly 60 babies are stillborn. Australia experiences six stillbirths a day.
Over the past two years, ProPublica has revealed systemic failures at the federal and local levels, including not prioritizing research, awareness and data collection, conducting too few autopsies after stillbirths and doing little to combat stark racial disparities. And while efforts are starting to surface in the U.S. — including two stillbirth-prevention bills that are pending in Congress — they lack the scope and urgency seen in Australia.
“If you ask which parts of the work in Australia can be done in or should be done in the U.S., the answer is all of it,” said Susannah Hopkins Leisher, a stillbirth parent, epidemiologist and assistant professor in the stillbirth research program at the University of Utah Health. “There’s no physical reason why we cannot do exactly what Australia has done.”
Australia’s goal, which has been complicated by the pandemic, is to, by 2025, reduce the country’s rate of stillbirths after 28 weeks by 20% from its 2020 rate. The national plan laid out the target, and it is up to each jurisdiction to determine how to implement it based on their local needs.
The most significant development came in 2019, when the Stillbirth Centre of Research Excellence — the headquarters for Australia’s stillbirth-prevention efforts — launched the core of its strategy, a checklist of five evidence-based priorities known as the Safer Baby Bundle. They include supporting pregnant patients to stop smoking; regular monitoring for signs that the fetus is not growing as expected, which is known as fetal growth restriction; explaining the importance of acting quickly if fetal movement changes or decreases; advising pregnant patients to go to sleep on their side after 28 weeks; and encouraging patients to talk to their doctors about when to deliver because in some cases that may be before their due date.
Officials estimate that at least half of all births in the country are covered by maternity services that have adopted the bundle, which focuses on preventing stillbirths after 28 weeks.
“These are babies whose lives you would expect to save because they would survive if they were born alive,” said Dr. David Ellwood, a professor of obstetrics and gynecology at Griffith University, director of maternal-fetal medicine at Gold Coast University Hospital and a co-director of the Stillbirth Centre of Research Excellence.
Australia wasn’t always a leader in stillbirth prevention.
In 2000, when the stillbirth rate in the U.S. was 3.3 per 1,000 total births, Australia’s was 3.7. A group of doctors, midwives and parents recognized the need to do more and began working on improving their data classification and collection to better understand the problem areas. By 2014, Australia published its first in-depth national report on stillbirth. Two years later, the medical journal The Lancet published the second report in a landmark series on stillbirths, and Australian researchers applied for the first grant from the government to create the stillbirth research center.
But full federal buy-in remained elusive.
As parent advocates, researchers, doctors and midwives worked to gain national support, they didn’t yet know they would find a champion in Keneally.
Keneally’s improbable journey began when she was born in Nevada to an American father and Australian mother. She grew up in Ohio, graduating from the University of Dayton before meeting the man who would become her husband and moving to Australia.
When she learned that her daughter, who she named Caroline, would be stillborn, she remembers thinking, “I’m smart. I’m educated. How did I let this happen? And why did nobody tell me this was a possible outcome?”
A few years later, in 2003, Keneally decided to enter politics. She was elected to the lower house of state parliament in New South Wales, of which Sydney is the capital. In Australia, newly elected members are expected to give a “first speech.” She was able to get through just one sentence about Caroline before starting to tear up.
As a legislator, Keneally didn’t think of tackling stillbirth as part of her job. There wasn’t any public discourse about preventing stillbirths or supporting families who’d had one. When Caroline was born still, all Keneally got was a book titled “When a Baby Dies.”
In 2009, Keneally became New South Wales’ first woman premier, a role similar to that of an American governor. Another woman who had suffered her own stillbirth and was starting a stillbirth foundation learned of Keneally’s experience. She wrote to Keneally and asked the premier to be the foundation’s patron.
What’s the point of being the first female premier, Keneally thought, if I can’t support this group?
Like the U.S., Australia had previously launched an awareness campaign that contributed to a staggering reduction in sudden infant death syndrome, or SIDS. But there was no similar push for stillbirths.
“If we can figure out ways to reduce SIDS,” Keneally said, “surely it’s not beyond us to figure out ways to reduce stillbirth.”
She lost her seat after two years and took a break from politics, only to return six years later. In 2018, she was selected to serve as a senator at Australia’s federal level.
Keneally saw this as her second chance to fight for stillbirth prevention. In the short period between her election and her inaugural speech, she had put everything in place for a Senate inquiry into stillbirth.
In her address, Keneally declared stillbirth a national public health crisis. This time, she spoke at length about Caroline.
“When it comes to stillbirth prevention,” she said, “there are things that we know that we’re not telling parents, and there are things we don’t know, but we could, if we changed how we collected data and how we funded research.”
The day of her speech, March 27, 2018, she and her fellow senators established the Select Committee on Stillbirth Research and Education.
Things moved quickly over the next nine months. Keneally and other lawmakers traveled the country holding hearings, listening to testimony from grieving parents and writing up their findings in a report released that December.
“The culture of silence around stillbirth means that parents and families who experience it are less likely to be prepared to deal with the personal, social and financial consequences,” the report said. “This failure to regard stillbirth as a public health issue also has significant consequences for the level of funding available for research and education, and for public awareness of the social and economic costs to the community as a whole.”
It would be easy to swap the U.S. for Australia in many places throughout the report. Women of Aboriginal and Torres Strait Islander backgrounds experienced double the rate of stillbirth of other Australian women; Black women in America are more than twice as likely as white women to have a stillbirth. Both countries faced a lack of coordinated research and corresponding funding, low autopsy rates following a stillbirth and poor public awareness of the problem.
The day after the report’s release, the Australian government announced that it would develop a national plan and pledged $7.2 million in funding for prevention. Nearly half was to go to education and awareness programs for women and their health care providers.
In the following months, government officials rolled out the Safer Baby Bundle and pledged another $26 million to support parents’ mental health after a loss.
Many in Australia see Keneally’s first speech as senator, in 2018, as the turning point for the country’s fight for stillbirth prevention. Her words forced the federal government to acknowledge the stillbirth crisis and launch the national action plan with bipartisan support.
Australia’s assistant minister for health and aged care, Ged Kearney, cited Keneally’s speech in an email to ProPublica where she noted that Australia has become a world leader in stillbirth awareness, prevention and supporting families after a loss.
“Kristina highlighted the power of women telling their story for positive change,” Kearney said, adding, “As a Labor Senator Kristina Keneally bravely shared her deeply personal story of her daughter Caroline who was stillborn in 1999. Like so many mothers, she helped pave the way for creating a more compassionate and inclusive society.”
Keneally, who is now CEO of Sydney Children’s Hospitals Foundation, said the number of stillbirths a day in Australia spurred the movement for change.
“Six babies a day,” Keneally said. “Once you hear that fact, you can’t unhear it.”
Australia’s leading stillbirth experts watched closely as the country moved closer to a unified effort. This was the moment for which they had been waiting.
“We had all the information needed, but that’s really what made it happen.” said Vicki Flenady, a perinatal epidemiologist, co-director of the Stillbirth Centre of Research Excellence based at the Mater Research Institute at the University of Queensland, and a lead author on The Lancet’s stillbirth series. “I don’t think there’s a person who could dispute that.”
Flenady and her co-director Ellwood had spent more than two decades focused on stillbirths. After establishing the center in 2017, they were now able to expand their team. As part of their work with the International Stillbirth Alliance, they reached out to other countries with a track record of innovation and evidence-based research: the United Kingdom, the Netherlands, Ireland. They modeled the Safer Baby Bundle after a similar one in the U.K., though they added some elements.
In 2019, the state of Victoria, home to Melbourne, was the first to implement the Safer Baby Bundle. But 10 months into the program, the effort had to be paused for several months because of the pandemic, which forced other states to cancel their launches altogether.
“COVID was a major disruption. We stopped and started,” Flenady said.
Still, between 2019 and 2021, participating hospitals across Victoria were able to reduce their stillbirth rate by 21%. That improvement has yet to be seen at the national level.
A number of areas are still working on implementing the bundle. Westmead Hospital, one of Australia’s largest hospitals, planned to wrap that phase up last month. Like many hospitals, Westmead prominently displays the bundle’s key messages in the colorful posters and flyers hanging in patient rooms and in the hallways. They include easy-to-understand slogans such as, “Big or small. Your baby’s growth matters,” and, “Sleep on your side when baby’s inside.”
As patients at Westmead wait for their names to be called, a TV in the waiting room plays a video on stillbirth prevention, highlighting the importance of fetal movement. If a patient is concerned their baby’s movements have slowed down, they are instructed to come in to be seen within two hours. The patient’s chart gets a colorful sticker with a 16-point checklist of stillbirth risk factors.
Susan Heath, a senior clinical midwife at Westmead, came up with the idea for the stickers. Her office is tucked inside the hospital’s maternity wing, down a maze of hallways. As she makes the familiar walk to her desk, with her faded hospital badge bouncing against her navy blue scrubs, it’s clear she is a woman on a mission. The bundle gives doctors and midwives structure and uniform guidance, she said, and takes stillbirth out of the shadows. She reminds her staff of how making the practices a routine part of their job has the power to change their patients’ lives.
“You’re trying,” she said, “to help them prevent having the worst day of their life.”
Christine Andrews, a senior researcher at the Stillbirth Centre who is leading an evaluation of the program’s effectiveness, said the national stillbirth rate beyond 28 weeks has continued to slowly improve.
“It is going to take a while until we see the stillbirth rate across the whole entire country go down,” Andrews said. “We are anticipating that we’re going to start to see a shift in that rate soon.”
As officials wait to receive and standardize the data from hospitals and states, they are encouraged by a number of indicators.
For example, several states are reporting increases in the detection of babies that aren’t growing as they should, a major factor in many late-gestation stillbirths. Many also have seen an increase in the number of pregnant patients who stopped smoking. Health care providers also are more consistently offering post-stillbirth investigations, such as autopsies.
In addition to the Safer Baby Bundle, the national plan also calls for raising awareness and reducing racial disparities. The improvements it recommends for bereavement care are already gaining global attention.
To fulfill those directives, Australia has launched a “Still Six Lives” public awareness campaign, has implemented a national stillbirth clinical care standard and has spent two years developing a culturally inclusive version of the Safer Baby Bundle for First Nations, migrant and refugee communities. Those resources, which were recently released, incorporated cultural traditions and used terms like Stronger Bubba Born for the bundle and “sorry business babies,” which is how some Aboriginal and Torres Strait Islander women refer to stillbirth. There are also audio versions for those who can’t or prefer not to read the information.
In May, nearly 50 people from the state of Queensland met in a large hotel conference room. Midwives, doctors and nurses sat at round tables with government officials, hospital administrators and maternal and infant health advocates. Some even wore their bright blue Safer Baby T-shirts.
One by one, they discussed their experiences implementing the Safer Baby Bundle. One midwifery group was able to get more than a third of its patients to stop smoking between their first visit and giving birth.
Officials from a hospital in one of the fastest-growing areas in the state discussed how they carefully monitored for fetal growth restriction.
And staff from another hospital, which serves many low-income and immigrant patients, described how 97% of pregnant patients who said their baby’s movements had decreased were seen for additional monitoring within two hours of voicing their concern.
As the midwives, nurses and doctors ticked off the progress they were seeing, they also discussed the fear of unintended consequences: higher rates of premature births or increased admissions to neonatal intensive care units. But neither, they said, has materialized.
“The bundle isn’t causing any harm and may be improving other outcomes, like reducing early-term birth,” Flenady said. “I think it really shows a lot of positive impact.”
As far behind as the U.S. is in prioritizing stillbirth prevention, there is still hope.
Dr. Bob Silver, who co-authored a study that estimated that nearly 1 in 4 stillbirths are potentially preventable, has looked to the international community as a model. Now, he and Leisher — the University of Utah epidemiologist and stillbirth parent — are working to create one of the first stillbirth research and prevention centers in the U.S. in partnership with stillbirth leaders from Australia and other countries. They hope to launch next year.
“There’s no question that Australia has done a better job than we have,” said Silver, who is also chair of the University of Utah Health obstetrics and gynecology department. “Part of it is just highlighting it and paying attention to it.”
It’s hard to know what parts of Australia’s strategy are making a difference — the bundle as a whole, just certain elements of it, the increased stillbirth awareness across the country, or some combination of those things. Not every component has been proven to decrease stillbirth.
The lack of U.S. research on the issue has made some cautious to adopt the bundle, Silver said, but it is clear the U.S. can and should do more.
There comes a point when an issue is so critical, Silver said, that people have to do the best they can with the information that they have. The U.S. has done that with other problems, such as maternal mortality, he said, though many of the tactics used to combat that problem have not been proven scientifically.
“But we’ve decided this problem is so bad, we’re going to try the things that we think are most likely to be helpful,” Silver said.
After more than 30 years of working on stillbirth prevention, Silver said the U.S. may be at a turning point. Parents’ voices are getting louder and starting to reach lawmakers. More doctors are affirming that stillbirths are not inevitable. And pressure is mounting on federal institutions to do more.
Of the two stillbirth prevention bills in Congress, one already sailed through the Senate. The second bill, the Stillbirth Health Improvement and Education for Autumn Act, includes features that also appeared in Australia’s plan, such as improving data, increasing awareness and providing support for autopsies.
And after many years, the National Institutes of Health has turned its focus back to stillbirths. In March, it released a report with a series of recommendations to reduce the nation’s stillbirth rate that mirror ProPublica’s reporting about some of the causes of the crisis. Since then, it has launched additional groups to begin to tackle three critical angles: prevention, data and bereavement. Silver co-chairs the prevention group.
In November, more than 100 doctors, parents and advocates gathered for a symposium in New York City to discuss everything from improving bereavement care in the U.S to tackling racial disparities in stillbirth. In 2022, after taking a page out of the U.K.’s book, the city’s Mount Sinai Hospital opened the first Rainbow Clinic in the U.S., which employs specific protocols to care for people who have had a stillbirth.
But given the financial resources in the U.S. and the academic capacity at American universities and research institutions, Leisher and others said federal and state governments aren’t doing nearly enough.
“The U.S. is not pulling its weight in relation either to our burden or to the resources that we have at our disposal,” she said. “We’ve got a lot of babies dying, and we’ve got a really bad imbalance of who those babies are as well. And yet we look at a country with a much smaller number of stillbirths who is leading the world.”
“We can do more. Much more. We’re just not,” she added. “It’s unacceptable.”
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