Why do people question medical stuff?

[QueenPaw]

Post on FB I know from midwives saying basically "these sleep positioned/nest things are dangerous and increase SIDS risk, don't use"

Replies
< tags friend > "these look good, should get one for Baby X"
NICU use them, they can't be that dangerous (because obviously a hospital with monitoring is the same as home)
Shouldn't sell them if they're that dangerous
I used one and my baby is fine, got to make your own choices
Nothing wrong with them, you do you hun
Then a load of laughing emojis at anyone who rightly points out all the evidence and links to it with "here come the mum police"

I'm just WTF at it. Like the midwife is actively saying these are DANGEROUS and they're all ah well, my baby, and they're fine

They changed the advice on co sleeping from 'don't do it' to 'here's the least risky way to do it' because the reality was that a huge proportion of people were doing it because the alternative was sleep deprived madness.

Sorry, that was rude of me.

What I should say is that a lot of people imagine that, if medical advice has changed, that proves medical advice is not very reliable.

Medical advice should change regularly. You'd bloody hope! Else why are so many people working their socks off trying to find a better cure for cancer, a better way of preventing SIDS, a better way of lowering incidence of stillbirth?

My personal feeling is that people should be free to make their own choices but these should be informed choices and a lot of the time they are not.

I know nests and pods aren’t recommended. I also know ds will not sleep just on the base of the crib and I understand why. I couldn’t either. So I’ve made the choice to have a nest. It’s as safe as possible - I replaced his Sleepyhead with a Purflo and I never leave him sleeping alone, but I do know the official advice is for a bare crib.

I find people are like this when it comes to stuff with babies: I think it’s a mixture of that they did it themselves so think that makes it fine or feel outraged that someone might tell them what to do with their babies. The way people are about the advice from health visitors is a good example of that.

If anyone wants any ACTUAL evidence, the Lullaby Trust has plenty. See also the unicef baby friendly guidance on safe co sleeping.

Ds wasn't born in uk and we did t move here until he was 2 and went into a bed.

I had cot bumpers - recommended. Also rolled up towels down the side of cot from newborn (guess that's like a sleep cushion thing?) also recommended as he went straight in cot as hated crib.

I'm assuming that was country based and not time based as he's only a teen now so was a decade and a half ago only?

I don't use nests etc but I can see why some people do. It's about judgement of the risks. There's not a person alive who has followed medical guidelines every minute every day of their whole life. Even people who did follow guidelines religiously often find that they did things "wrong" as guidelines have changed.

Medical guidelines aren't sent down from on high on a stone tablet. They are written from an evidence base but they are also influenced by societal ideas and cultural norms, as well as the issuing department/organisation avoiding getting sued. Also they are written to be as simple and easily understood as possible.

@An0n0n0n

Putting my hard hat on....

People only seem to care about evidence for some things. Most people will loudly decry bumpers and front sleeping and co sleeping because of evidence BUT they promote formula feeding when there is evidence if risks to formula feeding - but that is promoted as a choice.

What I'm saying is that I don't like people choosing which evidence they like to promote a choice that they are biased towards.

I agree with this. I coslept with my son but I researched it how to do it safely. I was adamant that I would follow all guidelines. I tried a moses basket, a next to me crib and a cot, my son would sleep in none of them for more the 20 minutes if I was lucky. I did the safest thing for me and my baby. I put him beside me asleep in the bed rather then risk falling asleep with him on the sofa ( which is where most co sleeping deaths occur).

@SarahAndQuack it’s not always that people are stupid. Of course medical advances mean advice will change. But what it means is that you can’t always take such advice as ‘you absolutely must/must not do this’ because it’s not always right. Not talking specifically about the nests here, rather just generally, that’s why people make those comments.

[quote Retrievemysanity]@SarahAndQuack it’s not always that people are stupid. Of course medical advances mean advice will change. But what it means is that you can’t always take such advice as ‘you absolutely must/must not do this’ because it’s not always right. Not talking specifically about the nests here, rather just generally, that’s why people make those comments.[/quote]
That is a form of stupidity, though, isn't it?

Saying 'you can't always take advice because it is not always right' is fine in isolation.

Saying 'you can't always take advice because the best advice at the time may be superseded' is very different.

I don't think there's anything wrong with people making informed decisions about risk. But justifying ignoring advice on the basis that it might be superseded by better advice later on? That's stupid and totally illogical.

It wasn’t when I had my youngest 3 years ago... so it changed in the last 3 years? The hv looked at me horrified when I said I was co sleeping and told me not to.

I'm not saying I would admit it to a health visitor. But the guidance online and medical evidence shows that co sleeping with the mother, if breastfeeding, not drinking, not obese, and a non smoker, is equally safe, as long as you keep a clear space for the baby. Bed sharing doubtless increases the risk of suffocation - but that is controllable if you are sensible. However, babies also breathe better if they are near their mother - so death of unknown cause may be less likely. SIDS is really rare in countries where bed sharing is routine.

I must admit I find SIDS confusing. A lot of these deaths are actually due to suffocation rather than being of unknown cause. I don't really see why a baby dying because it fell down the side of the sofa and suffocated (or rolled into a sleepy head) can be classed the same as one who died of unknown causes whilst lying on its back in an empty cot.

What I should say is that a lot of people imagine that, if medical advice has changed, that proves medical advice is not very reliable.

It does prove that, surely. There is a lot of current official advice that is highly likely to change within the next decades.
Weaning at 6 months is an example. Its pretty certain now that delaying weaning till 6 months can lead to food allergies. But official advice still says 6 months.
You are currently allowed to face a child forward in a car seat from 9 months - that will change within a few years.
Formula was thought better than breast. Now the other way around.
Diesel cars were low tax as thought to be better for environment. Now known to be worse.
Cholesterol in eggs was thought to cause high blood cholesterol. Now known to be wrong.
High carbohydrate low fat diets thought to be healthy. Now evidence shows the opposite to be true (official advice hasn't caught up)
Episiotomy was thought to prevent tears - now known to increase the risk.
Dentists tell you that eating raisins causes tooth decay in children - not true.
Vets tell you that neutering your male dog prevents illness - not true in fact the reverse.
There are countless other examples.
Obviously most people are not equipped to analyse the latest evidence and are forced to rely on what their health visitor or NHS guidance tells them in good faith. But for any issue where the evidence can only be gathered by observation (as opposed to e.g. drug trials where patients are randomly allocated to receive one thing or another) it's very easy for bias to creep in, because the reasons behind people's choice of how to act make a huge difference to the outcome. It's not necessarily wrong to make a decision taking into account both your own circumstances and the official advice.

In reality is anyone saying "sod the guidelines I will put my baby in a nest because I think the guidelines may change" or are they actually saying "I am going mad from lack of sleep, I can't cope any more,let me try this nest as a last resort, oh the baby actually sleeps in it thank god, I am a bit worried about cot death but my baby is too young too move yet anyway so it seems the risk is minimal, it seems a better option that putting the baby on its front as that is even more risky, also deaths from these products are rarer than being struck by lightning, let's go with it for now". The second decision making process is a lot more logical and can conceivably even be the best decision for someone, depending on their situation. Life is full of risk that has to be weighed up, and choices around babies are no different.

YANBU. I think people need more explicit language. SIDS is too commonly used. Perhaps people would listen more if it said something like "don't use these nests. It increases the risk of you waking up to find your baby dead". It's harsh but true.

But the commenters raise good questions. They SHOULD be made illegal to sell. And NICUs should make it clear why it's ok to make nests in hospital but not at home. And why it's encouraged for babies to wear hats in hospitals but advised not to at home...

More education. For some people, it isn't common sense and unfortunately it's their babies who are put at risk. Few people put their babies at risk intentionally, usually it's ignorance.

I'm a bedsharer. There is a huge wealth of research out there which suggests in fact it is the safest place for baby, providing all if the safety rules are adhered to (e.g. Safe 7).
My midwife (private homebirth) and health visitor were both bedsharers so I was well supported.

People only seem to care about evidence for some things. Most people will loudly decry bumpers and front sleeping and co sleeping because of evidence BUT they promote formula feeding when there is evidence if risks to formula feeding - but that is promoted as a choice.

These aren’t comparable things. Breastfeeding is ‘better’ than formula feeding because breast milk is perfectly designed to meet infant nutritional needs and can’t be improved upon artificially. But formula is a totally healthy and safe alternative for women who can’t or don’t want to breastfeed. That’s very different to not following safe sleep rules, which is dangerous and could lead to the baby dying.

@CloudFormations but it is well documented that formula fed babies are at higher risk of SIDS. So is a formula feeding mother wilfully ignoring safety advice and choosing to put her baby at higher risk of SIDS? or is she weighing up risks and pros and cons and going with what feels best for her? I know quite a few women who never even tried breastfeeding, fully formula fed from birth. You could say they chose to ignore the increased risk of SIDS and infections (which could lead to serious illness or death). But you’re saying that’s different? How? Formula is safe yes. But a baby fed on it is statistically more likely to die. So how is it different?

FWIW my babies slept in a sleepyhead and / or co-slept. They wouldn’t sleep in the next 2 me cot on a hard flat surface. They just wouldn’t. After many nights falling asleep sat up in bed holding a tiny baby I decided it was safer to use a nest or purposely and safely co-sleep. This is what many end up doing because the risk of the baby dying being held on the sofa or in bed and the parent falling asleep is higher. So it’s a balance of risk. It’s not risk free, but it’s safer than total exhaustion. If your baby will sleep on a hard flat surface with nothing around them then that’s great and preferable, but many won’t.

"Safe" is not a binary concept. Things are not either "safe" or "unsafe", everything carries a level of risk that will vary hugely according to their own circumstances, and advice changes constantly. For example, where I live, 10 years ago the advice would have been:

• no sleep nest type things
• no letting baby sleep on tummy or side
• absolutely no co sleeping

Now there's been more research and an acknowledgement of the fact that in those conditions some babies will actually just not sleep well, and that actually co-sleeping can be done safely and they are starting to say it's ok now and acknowledging that parents who get no sleep aren't safe either.

The thing about SIDS is its poorly understood. There's an assumption among the public that it involves suffocating on stuff in the cot. That isn't SIDS. That's suffocation.

SIDS is unexplained sudden infant death. They don't know what causes it. A paediatrician I know once speculated to me that it might be something that happens when a baby is in a deeper sleep, because its known that babies sleep more lightly on their backs that on their stomachs, which might be why SIDS risk is reduced when babies sleep on their backs.

People can't keep up with the ever changing advice and the fact that SIDS is unexplained so they really don't know what happens or why the current advice seems to reduce risk.

@Hadenough21 that is a very fair point and I do understand where you’re coming from now. I suppose I see it as different because many women can’t breastfeed, so don’t have any option but to use formula, whereas I would have said that there is always the option to choose to follow safe sleep rules. But I suppose I’m coming from a place of privilege because my baby does happily sleep in an empty cot, so I haven’t had to address what I would do if he simply wouldn’t sleep that way.

I think there’s also a question of degree of danger - breastfeeding reduces the risk of SIDS, but how great is that reduction compared to other safe sleep rules? Some things are obviously more dangerous than others (sleeping on the sofa with a baby or putting the baby to sleep on its front are obviously at the dangerous end of the spectrum, for example, formula feeding is at the less dangerous end of the spectrum) but I don’t know where sleep nests in particular fall. So I take your point that people have to weigh up the risks for all of these decisions in their own circumstances.

Sorry, rambling a bit - but thanks for helping me understand your point, I think I see the issue more clearly now.

BooomShakeTheRoom
In our experience the NICU did give us all the information. Anecdotally, the people I know who play the NICU card are generally people who haven't had a child in NICU. There's much more bad advice with the 'but NICU...' argument on non-NICU Facebook groups than in groups for parents with babies in NICU, in my experiences anyway.

I think people don't like to accept that medical advice changes as we learn more, plus a bit of survivors' bias, plus a bit of wanting to justify choices they've already made.

The same happens on car seat discussions. At the moment extended rear facing reduces the risk of serious injury, but if you ever see a thread where this is mentioned then those who choose to forward face asap often get really snippey and it becomes a swarm of 'you do you hun, mum knows best, your baba your rules', which is fine because parents can, and will, make the decisions they want, but it doesn't change the fact the risk rate is lower rear facing than forward facing.

NHS advice has changed a lot since the 80s, but also cot deaths have reduced by about 85% very quickly in that time, so it’s not a bad thing that medical advice changes, there was just a lot more research into the causes of SIDS.
Of course the vast majority of babies will be fine even if bottle fed / a parent smokes / cot bumpers and nests are used etc, but equally the vast majority of SIDS deaths are prevented if people follow the guidelines.
I’ve seen one child brought in who died from SIDS, we worked on them for hours in A&E before calling it, worst thing I’ve ever seen was that poor little baby and her parents. Mums in that position aren’t going to be on Mumsnet saying actually - I did use x and look what happened, you’re not going to hear direct first hand accounts of the other side.

With my 5yo the midwife came to do my checks, and she asked me where baby was sleeping. I told her honestly as she was the youngest of 3 all under 3 in bed with me. Because I needed sleep to function. I said I knew the guidelines about not co-sleeping but I was going to follow best practice. Midwife seemed happy, said it’s not frowned up anymore. Maybe different now.

Sometimes I think we forget babies have been around for millennia but cots not so much.

I've had a child in NICU (and an 8 week corrected baby in PICU too) and I would not regard a NICU as a haven of best practice in caring for infants.

I had a massive row with my daughters nurses because they were doing "dummy dips" to try an IUGR, 3lb 9oz, 6 week premature baby go 3 hours between tube feeds. One nurse was stood their saying almost proudly "quite the lungs on her, she was really shouting at 1am, we had to do dummy dips". I was furious, she was crying for food, she was on expressed breast milk and the doctors agreed with me that she should be fed on demand. I had to point out that when they checked the tube positioning by drawing up stomach acid through it and testing it, there was never any milk in there by an hour after a feed as breast milk is digested so fast.

@CloudFormations thank you for the balanced reply, I understand where you’re coming from too but I think the main point in your post that stands out is that your baby did sleep in an empty cot. If they hadn’t and only wanted to be held 24/7 (which is sooo common!) you’d have had a problem and you’d have had to weigh up risks and make a judgement call. With my first baby me and dh had to sleep in shifts so one of us could hold her. She’d do 20 mins max in her lovely brand new Moses basket, same in the next 2 me crib we went out and bought hoping it would help! I was fully breastfeeding and I kept falling asleep with her feeding in bed because I couldn’t keep my eyes open and she wouldn’t go in the crib. I have many friends who found the same. The nests wouldn’t sell so well if people didn’t need them. Loads of parents ‘secretly’ co-sleep because they don’t want to openly admit it to HV’s etc for fear of being berated about safety etc. But it’s the only way they can get any sleep! I felt the risk of me suffocating or dropping my baby sat up in bed with my eyes closing all the time was higher than planning to co-sleep safely. With my second baby I decided to go with a sleepyhead in the bedside crib as I felt that was probably a bit safer than having a tiny baby right next to me in bed. I love my children more than life and I did what I felt was best, this is the case for 99.9% of parents I’m sure.