It’s SIDS Awareness Month!

October is such a busy month for awareness. Though I think people should make an effort to be aware 365 days of the year, months like this do help to boost overall, long-term awareness (or it seems like they do!). Among other issues/concerns being brought to light this month (and I’ll be talking about another in the coming week that is very important as well), it is also Sudden Infant Death Syndrome (SIDS) awareness month.

*Disclaimer: This blog is intended for informational purposes only. The information on this blog should not be used as a substitute to medical advice or medical treatment. As always, your Primary Care Provider, a doctor, or another health professional is your best resource for specific questions and medical advice. If you believe you or a loved one are experiencing a medical emergency, please contact 911.*

Lets talk a little bit about SIDS – and if you want to know a bit more about baby sleep, I will also have a new episode of the podcast out this week talking once again with Cayla, the pediatric sleep specialist behind Sleeping Beauties, about SIDS, safe sleep, and more. You can see my first interview with Cayla from IGTV here, or on my Instagram profile under the IGTV tab.

What is SIDS?

Sudden Infant Death Syndrome (SIDS) is a subset of Sudden Unexpected Infant Death (SUID).

SUID is what it sounds like – the unexpected death of a child under a year of age. SIDS is just one example of this – essentially the type of SUID that can’t be attributed to an exact cause, after further investigation.

Another example of SUID includes Accidental Suffocation and Strangulation in Bed (ASSB), which again, is pretty self-explanatory. It concerns any infant death that involves suffocation or asphyxiation (infant has their airway blocked) in a bed or another sleeping environment. SUID can also be related to things like infection, ingestion, and other causes that are not known until further investigation is completed.

Roughly 3 600 babies are affected by SUID each year in the United States (# varies based on source). In Canada, determining the annual rate is a bit more difficult since it is classified differently by coroners depending on which province or territory you look at. In 2013, the rate for the country was 11.3 SIDS deaths per 100 000 live births (note: this is for deaths noted as SIDS related only).

There is still some confusion around the difference between SUID and SIDS, and their definitions are not consistent across sources (this is true in both the US and Canada). Also, classification on death certificates varies – so statistics could be skewed as a result. This is important to note. As a result of this confusion – this post will focus mainly on SIDS.

Who is most at risk?

Risk for SIDS is associated with multiple factors – this includes both environmental factors (meaning ones that we can usually change/prevent) and genetic/internal factors (that we cannot control).

One factor is certainly the age of the child – SIDS, as per its definition, accounts only for sudden/unexplained death in children under one year of age. Rates of SIDS appear to be highest among the 2-4 month age range. It is less common in children >6 months old.

Other factors that are related to increased SIDS occurrence include:

  • Sex of the baby (higher rates are seen in males)
  • Gestation at birth (prematurity is considered a risk factor for occurrence)
  • Weight at birth (low birth weight is related to higher occurrence of SIDS)
  • Socioeconomic status (SES) and ethnicity (lower SES is related to higher occurrence, and Aboriginal populations have been shown to be more affected)

Although it is recognized that certain internal/genetic factors impact SIDS risk, more research is needed to understand exactly what these factors are.

What can I do to decrease risk of SIDS?

The factors I listed above are mostly non-modifiable factors. We can’t change the sex, birth weight, or gestation at birth of our baby. We can work towards a better and more equitable society, where less people are considered of low SES and vulnerable populations are no longer so vulnerable – however this is a long-term modifiable factor that requires a lot of work on the part of everyone (an important reminder from this if you are American – get out to vote!). That is a discussion for another post.

There are modifiable risk factors related to SIDS that have been determined by studies. Things you can do to help prevent SIDS from occurring, include:

You may notice that some babies in the NICU are placed on their belly to sleep, to help with their breathingkeep in mind this is under the advice and guidance of a healthcare provider.

Won’t my baby choke on their back? The human body’s anatomy (the gag reflex for example) generally prevent this from happening.

My baby fell asleep in the car seat/swing/etc. – babies will fall asleep in the car, it’s going to happen. Some will also fall asleep in other moving equipment like swings, Mamaroos, and the stroller. The risk with these things is that baby’s head can lean forward and stop them from breathing – so the advice is to move them when you can. At the very least, you should not leave a baby unmonitored in any of these devices.

  • Avoid having blankets, pillows, crib bumpers, toys, sleep positioners and other items like this in the bed.

Things like blankets and pillows are suffocation risks – pretty easy to understand why as baby is so small and these things are large and for a newborn – often immovable.

Crib bumpers are not supported by evidence.

My baby gets cold at night – try a sleep sack instead! If you must use a blanket, the guidance from the Canadian Pediatric Society says to use a very lightweight and breathable blanket. The other reason for this (beyond the suffocation risk) is the risk for overheating with a blanket – baby’s temperature regulation is still maturing and it can be easier for them to get overheated (as well as the opposite, very cold) as a result.

  • Prevent baby’s exposure to tobacco smoke (talk to your provider about this if you have questions specific to your situation, but it has been shown that reduction of maternal smoking during pregnancy – or even moreso, quitting smoking – can reduce the risk of SIDS; secondhand exposure should also be avoided after birth)

To avoid secondhand exposure, don’t smoke in your car or near your baby (and ask others to do the same). Wash your hands well after smoking and speak to your provider for further guidance.

I really don’t like the wording of some of the guidelines (like Safe to Sleep) – some people can’t just stop smoking so easily. Follow the guidance of your healthcare provider and make a plan for how to tackle smoking cessation or reduction.

  • Room share with your baby for at least 6 months, but up to 1 year is even better

Yes, I know not everyone does this nor wants to do this. It is just a suggestion. Under 6 months, when the risk for SIDS is highest, it has been shown to reduce the risk.

Room sharing can, at least in the early weeks, be very convenient too – especially if you are breastfeeding. Baby is close by for those night time feeds.

However, breastfeeding isn’t something everyone wants to or is able to dowhich is fine. Remember how I said that SIDS is multifactorial before? Keep that in mind – if you use formula, you don’t need to sweat about this bulletpoint too much. There are other risk factors for you to modify above.

Again – not every baby will take one. Not to worry. It’s also ok if they spit it out once they fall asleep.

What about bed-sharing? You didn’t talk about that?

This blog is a place for me to share information. If you are looking for specific guidance on what you should do about your sleeping arrangements, I advise speaking to your healthcare provider. It can be a scary conversation to have as there is definitely the fear of judgment with this conversation – however, if you have a provider that you trust (something I keep reiterating), then you need not be afraid to ask questions and talk to them about this.

The guidance from the US and Canada is that baby be placed to sleep on a firm surface – in their own sleep space such as a crib or bassinet.

Both the US and Canadian guidelines also do not recommend bed-sharing (aka baby sleeping on the same sleep surface as mom, dad, or a sibling) due to increased risks of SIDS.

*Note that bed-sharing is not defined the same across all sources. Generally speaking though, bed-sharing would be sharing the same surface to sleep with baby, while another term, co-sleeping, refers (generally) to sleeping closely with baby (so it would include bed-sharing but also room sharing).

They both add that it is more dangerous to bed-share if baby (and this is the same guidance as in Canada):

  • is <4 months old;
  • baby was premature or had a low birthweight (as these are both already risk factors for SIDS);
  • anyone in the bed is a smoker;
  • anyone in the bed has used alcohol or drugs, even prescription drugs that may make them difficult to rouse;
  • the surface you are sleeping on is a sofa or waterbed;
  • or, baby is sleeping with someone who is not their parent.

Ok pause – do people still use waterbeds?! Anyways…

What does this mean? It is complicated, because there is certainly varying info about how to approach the topic of safe sleep.

One systematic review done in 2019 found that… we need more research on bed-sharing. Surprise, surprise. They also found that many families are bed-sharing (regardless of advice from medical professionals), so it might be more worth the effort to provide guidance on how to do so safely and reduce SIDS risks, rather than putting people in between a rock and what can sometimes be a very hard place (or, a very traditional place – cultural considerations are important when it comes to the bed-sharing discussion too, as this is something that is normal and common in many non-Western countries).

This sentiment was also echoed by a study done in New Zealand involving a safe sleep program – the better approach to risk reduction was shown to actually be meeting people where they are (providing “safer” sleep recommendations with bed-sharing), rather than having them do a total 360 in situations where they may not be willing or able.

Note: There is also the Safe Sleep 7 guidance which I see referenced a lot online – this comes from La Leche League. It is not wrong – it does actually highlight many of the same modifiable risk factors I mentioned above. However, I will mention my issue with it – I don’t like that they said only babies in those categories (premature, LBW – the risk factors for SIDS I mentioned near the top) are at risk for SIDS – because more research is still needed, even in regards to SIDS. There is still a lot of things that are not understood about SIDS – hence it being an essentially unexplained cause of death for infants. I wouldn’t jump to the conclusion that the factors we know are all the possible factors, or that we even are aware of all the factors (what about the genetic or cellular level changes we are still trying to understand?). I am never a fan of conclusions that are too sure of themselves, because it makes things too concrete and that’s not how our reality is. So, not to say it is wrong, but statements like that bug me and may given parents the wrong impression when it comes to risk.

I will be totally transparent for a moment, because I always try to be honest on here:

We have bed-shared. Does that make it ok/safe for everyone? Nope.

Did we speak to our care provider before to make it as safe as possible? Yes, we actually did and we followed the provided guidance. I am actually super uncomfortable with admitting this online, because I am a nurse and so I feel like I’m held to a ‘higher standard’ in some ways because of that (and you know, I also don’t eat any junk food or use Q-tips...). I also know there is a lot of judgment out there but I’m just going for it. I’m only human. This is me, sharing my truth. My dirty little secret, if you will.

I think it’s important to have these conversations openly and honestly, because it might empower someone else to talk about it – and yes, safe sleep is something that should be talked about. We shouldn’t be afraid to have these discussions – the fear related to this leads to people not having this discussion with their provider, and that can cause more problems and increase risk (notably, this is actually a common issue with many women’s health and just general sexual or reproductive health topics too).

In the end for us, it was an informed decision that both my husband and I made. Some nights are hard – during teething and developmental changes. We did a stint of no-sleep nights and we just realized it wasn’t sustainable for us. We had to find a way to cope that was safe for all of us – because two parents with no sleep is not safe, especially if we had to drive anywhere and on top of that, my husband operates dangerous machinery at work.

Not every night is like this (most nights she stays in her own bed – she actually sleeps well there) – but for the nights that are (and they come and go), it is how we have chosen to cope. However, I make sure we do so following all guidance available to us, and with extra advice from our provider.

You can pass judgment on me, I’m sure some will; but I care more about being honest right now, in hopes that it will inspire others to talk about this more often and hopefully further reduce the risks of SIDS.

In a perfect world, everyone would follow the guidance for the safest possible option. However, the world is not perfect – that doesn’t mean we can’t try to reduce SIDS risks anyways. All or nothing approaches, in most care situations, aren’t feasible or sustainable. Not everyone will listen or follow the best recommendation – and this doesn’t just apply to the infant sleep topic but so many others in care across the lifespan.

In care provision, we need to strive to provide the best recommendations – however we also need to take into consideration the reality of having a baby; cultural influences; and that in the end, we want parents to make an informed choice. We provide information but they leave our offices and go home and make their own decision, based on more factors than we could possibly examine or come to know in a 10 or 15-minute office visit. Even if they don’t choose the currently recommended and safest option, perhaps we can offer support either way – to make their option the safest it can be.

The first step though, and I’m talking to my care providers, is being more open – parents are scared to talk about these topics because they don’t want to be shamed or reprimanded. Not talking about this though could be putting their baby at risk of injury or even death. We need to have these conversations – even if we don’t agree with their decision. We can still provide guidance based on current research to reduce risks!

I’d venture to say that more often that not, parents want to keep their baby safe and alive. So why are they bed-sharing? Ask them. Have the discussion. Talk openly about the topic. Don’t just jump to conclusions. There are likely other factors involved – maybe some you can help with! Maybe some that you can’t – but you can still provide guidance for safety.

My final thoughts on safe sleep, for my parents reading: talk to your healthcare provider about any concerns, or challenges you may be facing. Yeah, yeah I know. I say this a lot. But it is a topic that is worth a discussion.

Cayla and I will be talking about these topics and more related to baby sleep on the podcast this week! I will share (as usual) as soon as the episode is available!

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