Five years ago today, I spoke to my sister for the last time. We spoke every Wednesday since COVID hit. Some time between Wednesday night and Friday morning, she died, probably early Thursday morning. She had epilepsy and we were aware, at least in theory, of the condition known as SUDEP (Sudden Unexpected Death in Epilepsy). My mum found her on Friday, face down in bed. To all appearances, she had simply stopped breathing.
When my son was born, like all new parents, we worried about SIDS. I spent a lot of time researching, reading, and trying to understand. One thing that kept nagging at me was the way most SIDS infants are found: face down in bed, appearing to have simply stopped breathing.
I’m now convinced that the underlying mechanism for both conditions is the same: arousal failures. When your arousal system is working correctly, your central nervous system brings you back to consciousness from unconsciousness. When you stop breathing in your sleep, it kicks in, and you wake up. If it fails, you don’t. You end up face down, having simply stopped breathing.
When planning for our son, my wife and I decided early that we would get a breathing monitor. This is mostly against current medical advice and guidance. Healthy Children (backed by the American Academy of Paediatrics), Red Nose Australia, and the Lullaby Trust, all say ’there’s no evidence that baby monitors prevent SIDS’. Many other organisations make the same recommendation.
These recommendations seem to be based on the safe sleeping recommendations from the AAP, which have undoubtedly saved thousands of lives over the years.
But I think the guidance here is misleading. It is true that there is no evidence consumer monitors prevent SIDS. But there’s a supporting assertion in the recommendation that “there is also concern that use of these monitors will lead to parent complacency and decreased adherence to safe sleep guidelines” which is completely unsupported. Neither position has been properly researched, and treating one unproven hypothesis as established while treating the other as disproven is not an evidence-based position.
The biggest study into breathing monitors is known as the ‘CHIME’ study, and it’s widely considered as evidence that home monitoring is not effective. However, the study itself has a disclaimer that this is not the conclusion one ought to draw.
The only indicative evidence in either direction comes from Freed, G., Meny, R., Glomb, W. et al., who found a significantly lower incidence of SIDS in infants connected to breathing monitors than those who were not in a study of almost 10 000 children. It’s not a perfect study, but it’s the best we’ve got.
The more I read, the more I noticed similarities in a lot of the literature: ‘false alarms’ dismissed because the infant was breathing when help arrived, inconsistent use of breathing monitors, inadequate survey sizes. I began to question the premise of a lot of these studies.
What if the monitor is not just a way of summoning help in time? What if the monitor is the help? What if the intervention is the alarm itself?
The Kahn study seems to support this idea: it looked at near-miss SIDS infants, and identified that even though they arouse themselves less frequently overall than babies in the control group, the volume needed to induce arousals was the same: the internal arousal trigger is not firing on its own, but it can still be triggered from outside. Even if a child stops breathing, they may still be able to arouse themselves if there’s a loud sound nearby.
I’m not the first to have this idea either. The AAMI published an article which suggests that where an alarm goes off, ‘[t]he truth of the matter is that there was likely an apneic event and the sound of the audible alarm surprised the infant, causing him or her to gasp and spontaneously resume breathing’. In fact, even the CHIME authors highlight the possibility that alarms caused arousal without exploring this idea any further.
Those ‘false alarms’ might actually be the exact signal we’re looking for in the data, and they’re not even being reported.
If I’m right, the guidance is harmful. Breathing monitors would be among the most effective tools we have for preventing infant death, and we would have spent thirty years telling parents not to use them. Instead, it seems that doctors primarily see them as emotional support tools for parents, rather than useful in their own right.
For those of us left behind, it’s reassuring that it appears that those who do die of either of these conditions never know what’s happening. One painful truth though is that it’s likely preventable. An early intervention might be enough for the person to start breathing again, and the window for this intervention is counted in minutes, not in seconds.
We’re expecting our second child, and we’ve already bought the breathing monitor.
And if it saves her life, we’ll probably never know.