#sleeponside campaign – likes and gripes

Tommy’s, a charity focused on reducing the worldwide stillbirth rate, just released its new #sleeponside campaign, which aims to inform expectant mothers worldwide that sleeping on your left side during your third-trimester of pregnancy is ideal, while sleeping on your back might significantly increase your stillbirth risk, and I have some opinions on this.

Likes
I’m located outside the UK, so I’m not as familiar with Tommy’s as I am with some other charities; however, from what I know, Tommy’s is the world’s leading organization focused on stillbirth research and prevention and saving babies, and I only wish we had a comparable organization in the United States.

It appears that Tommy’s consulted with some of the campaign’s primary stakeholders, specifically mothers who’ve experienced a stillbirth, to attempt to ensure the message was/is delivered sensitively (i.e. that it wouldn’t come across as victim blaming).

If there is something that could save a baby (or many) it’s generally worth communicating to the public. Various studies have shown that there are things mothers can do to help lower their stillbirth risk, including counting kicks or familiarizing themselves with their baby’s movement patterns, following their intuition (contacting their medical care provider if they suspect something, anything, might be amiss), and sleeping on their left side as opposed to on their back. If only everyone knew this information, mothers and care providers alike, it would probably help at least a bit in reducing the overall stillbirth rate.

The campaign has people talking about stillbirth, and this is generally a good thing. If the only thing this campaign achieves is getting society to talk about stillbirth, a topic so historically taboo, it’s probably, at the very least, had some sort of positive impact.

Gripes (NOTE: Some of these are personal gripes and no more, and I’m certainly no scientist or medical professional, so these should be taken as opinions, albeit educated ones, more than facts.)

The study sample sizes are super tiny. It appears that each study referenced consists of sub 1,500 participants. To put this into perspective, in this world, more than 350,000 babies are born per DAY. I’m no scientist or statistician or actuary, but this is definitely something that makes me go, “Hmmmmm…”

Most, if not all, of these studies’ findings are based heavily on recall bias, which means that, generally speaking, mothers were questioned regarding their sleep habits already knowing the outcome of their pregnancy (i.e. whether it ended with a living baby or in a stillbirth). First, when being questioned regarding a past event, I believe it’s been shown time and time again that even the sharpest of individuals can’t always correctly recall details.

Now, imagine a bereaved mother, struggling with all of the grief and trauma associated with losing her baby, and also the innate tendency to blame herself, being questioned about her sleep position during her pregnancy ending in loss. Even with the question worded in the most unbiased way possible, I’m not convinced her answer could be relied upon. (I’m mostly basing this on my knowledge of my ability to function for many months in the aftermath of my tragedy.)

This, coupled with the super tiny sample size, makes me not fully confident in the validity of the results of these studies. Just a few mothers answering incorrectly based on recall bias could swing results in either direction. And though it’s true four studies have now arrived at the same conclusion, I remain unconvinced.

A questionnaire format seems inherently flawed. If I understand correctly, the data for these studies were collected by asking questions to mothers who fit a set of predetermined criteria. It seems this sort of research should include something more, like some sort of sleep study or something…

During my subsequent pregnancy with Joel, I spent entire nights in the hospital hooked up to monitors, and we, with the help of our medical team, determined that he was generally unaffected by my sleep position. (And I slept in all positions, as the hospital beds were horribly uncomfortable.) No one ever found any link between my positioning and his performance on the continuous non-stress tests. Now, of course Joel is just one baby, but it seems that to find out exactly why most babies die during maternal sleep and under what circumstances this happens, some component of a study on optimal sleep position should actually include monitoring babies during maternal sleep.

The species isn’t this fragile… I believe (based on common sense and no research whatsoever) that if back sleep alone were a major contributing factor to stillbirth, fewer of us would exist on this planet. Life is, of course, fragile. A heart can stop as briskly as it starts. But, at the same time, it also isn’t so fragile. Pregnant women who run marathons, do heroin, go 40 weeks completely unaware that they’re pregnant, and yes, toss and turn at night, have healthy babies by the thousands on a daily basis. Of course this doesn’t mean we should behave recklessly, but in my opinion it’s a bit radical to conclude, “Because I slept on my back for a few hours, I probably killed my baby.”

“Sleep on your left side, and lower your stillbirth risk,” isn’t exactly a revolutionary concept. I slept diligently on my left side while pregnant with Matthew. All of my friends who lost babies slept diligently on their left sides. Some even constructed pillow barriers to ensure they remained firmly in the recommended position. Many of us knew this was good and healthy and lowered our stillbirth risk, yet, for us, it didn’t matter. In fact, I can’t name a single mother I know for whom it mattered. Of course mothers everywhere should be given this #sleeponside information in case they don’t already have it. I personally just wish we had something more…

It seems improved obstetric technology and better standard of care placing increased emphasis on assessing crucial structures like the umbilical cord and placenta would save far more babies. Matthew died from an obvious umbilical cord entanglement that likely could have been identified on ultrasound weeks earlier, yet it is standard of care in many countries for medical professionals to completely ignore the umbilical cord (and the placenta). As a result, many babies who potentially could have been saved are ticking time bombs, left for dead whether the mother sleeps on her left side, right side, back, or stomach. Standard of care should be based more on common sense as opposed to threats of legal liability. Someone smarter than I would have to figure out exactly how to do this, but it’s beyond frustrating to see little to no progress in this area.

#sleeponside grossly oversimplifies the issue. I know people are excited about the campaign, as they should be, and I realize a catchphrase is needed for a campaign to be memorable, but I think the unintended consequence, the danger here, is that society could start to believe that #sleeponside represents some kind of cure for stillbirth, while poor standard of care remains unaddressed and more in-depth studies (based on more than answers to questionnaires) go unfunded. I don’t get the impression that anyone affiliated with Tommy’s is trying to claim stillbirth is a simple issue, but I think its campaign might unintentionally send the incorrect message that it is.

While Tommy’s has attempted to roll out its campaign sensitively, I believe the campaign unintentionally victim blames, or at least allows others to more easily do so. Of course a victim’s feelings alone shouldn’t be a reason to withhold information that could save other babies, but it’s beyond frustrating to witness a huge and otherwise well-done campaign focusing on yet another thing a mother could do/have done to prevent her baby’s death. I can picture it now, someone who knows me sees a news story on this campaign and thinks, “Poor Christine – she didn’t know to sleep on her left side!!” Some of those outside the baby loss community already want a reason to blame us, to distance themselves from our tragedy, and I think this is just the sort of thing that gives them an easy way to do it.

Conclusion
I have some beefs with this campaign, and although stating them here might make me seem defensive and bitter, I actually believe I’m relatively unbiased. I knew to sleep on my left side, and I did, and I have spent zero time analyzing whether any minutes or hours spent on my back contributed to Matthew’s death. There is nothing in it for me emotionally to either personally accept or reject the findings of these most recent studies.

I think the findings of these studies and Tommy’s messages are worthy of communicating, and expectant mothers should try to sleep on their left side, and, overall, it’s a good thing that people are talking about stillbirth.

But I just also wish that such a major campaign could have tackled some of the bigger issues, maybe ones less directed towards inadvertently holding the mothers responsible when so many are predisposed to doing this already, and more directed towards making a dent in the standard of care gaps in the medical profession.

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15 thoughts on “#sleeponside campaign – likes and gripes

  1. I SO agree. I’ve had to quickly scroll past these stories from Star Legacy Foundation. This side sleeping thing isn’t new information either. I asked my MFM doctor a string of questions about what potentially caused my baby’s stillbirth including sleeping position, age, BMI, and any potential bumps and thumps from my older child. There was no discernible reason why my pregnancy suffered a massive FMH. There isn’t enough research. It’s frustrating. As for cord accidents, you’ve got it. Ten percent of stillbirths are due to cord accidents. IMAGE THE DAMN CORD!
    Thank you for this post. 💕

    Liked by 1 person

  2. God, yes. Yes yes yes. So much yes. I think that you did a great job getting down all the things we all spent the day talking about!! Wonderful post, and eloquently written (even though I imagine it wasn’t super easy to stay calm lol)

    Liked by 1 person

  3. Yes to all of that…. Main focus should be on improved medical care. Rainbow clinic in Manchester claims to have reduced the stillbirth rate in their area by 22%, was it because they asked mums to sleep on their side or because of enhanced pregnancy monitoring?

    Liked by 2 people

  4. I think it’s also important to note that this was an observational study, so no conclusions can be drawn about causation because of the potential for confounding factors. Like you said, there needs to be a sleep study. It wouldn’t be ethical to do a true controlled experiment with pregnant women (e.g., assign some women to sleep on their sides and some to sleep on their backs, and record the outcome) but we do need something that is MORE controlled and where more data is collected on other potential contributing factors.

    Liked by 2 people

  5. I had some similar thoughts when I saw the FB post from still aware, but not as clear and coherent. Mainly, I knew I had slept on my side and Jackson died anyway. I choose to share it anyway because of the awareness raising part, but now I will share your post because it is much more thorough and close to my thoughts and feelings. Thank you!

    Liked by 2 people

  6. Thanks for your post. I was feeling like total shit yesterday with this campaign. I’m glad it’s out there because anything that could help save a baby’s life is important. I just fear people see it and think “Oh mom2htb must have been sleeping on her back; if only she had been following the recommendations! What an idiot! That must be the real reason her baby died.” It’s upsetting because I never slept on my back! I tried to mostly sleep in my left, only periodically switching to my right once my legs and arms started to get numb. I wish they made it a bit more nuanced, like emphasizing that it reduces risk but by no means eliminates it.

    Like

  7. Seriously this sort of campaign makes me feel like shit. I slept on my side as much as I could. I had to switch back and forth because of hip pain, and I did wake up on my back even though I shoved a pillow behind me. I also counted kicks once a day as instructed by my OB, and my baby still died for no known reason.

    Liked by 4 people

  8. Nice post. I’m learning what women are going thru when you lose your babies inside you. I hope to grow more compassionate in these kinds of situations. Thanks to talented women like yourself, I’m getting there. For some unknown reason to me, it’s helping me in my on grief. I hardly think that study means much of anything. It was totally, I said totally, unscientific. They would need sleep studies to determined from thousands of women thru their whole pregnancy to have validation. Besides, in my mind, I don’t think sleeping on one side or the other matters. Do you really get much sleep as the baby grows closer to birth?

    Liked by 1 person

  9. There aren’t enough “likes” for this post. I slept on my side, had the fancy pillow, and all of that. I’m again doubting myself and wondering if i could have done something differently to save Rayna.

    Liked by 2 people

  10. As soon as the advice is out there that a woman should sleep on the side, any study carries a major confound: maybe the mothers who take care to fall asleep on their side are the ones who generally follow pregnancy advice, look up information, are more concerned about their baby (so monitor movements more), live in conditions where education is valued – which are different from conditions where education is not valued, etc etc.

    Liked by 2 people

    1. 100% agree. I think this study will most (And, in my opinion, perhaps almost exclusively) benefit women and babies in some lesser developed countries. But this could save hundreds of thousands, if not millions, of babies, and for this reason alone it is worthwhile. I’m personally left wanting more though (we tend to, right or wrong, think of improvements that could be made in our more immediate communities first, which I’m guilty of here), which I think a lot of us are… Hopefully this is only the beginning though. It’s a good and worthy beginning, and I’m glad it’s out there. I just hope it doesn’t have some of the unintended consequences I mentioned in more developed countries. I’m beyond frustrated with standard of care and wish someone, somewhere, would look at it more closely.

      Liked by 1 person

  11. Yes yes yes. I love this post. I cautiously slept on side and still lost my baby. I counted kicks and still lost her. I tried to know her pattern imo she didnt have a strict pattern. I got numerous DIFFERENT advice from different midwives. And the sad part is she could have been saved if third trimester scans existed at my hospital. Whilst i think the campaign is great the effect it has on me as a loss parent is feeling as I did something wrong. Unfortunately babies die and most of the time it has nothing to do with the mothers actions. Wish I could like this post a thousend times x

    Liked by 1 person

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