The recent events related to my daughter’s apnea, raised a series of questions to which, alas, no one can give definitive answers. Worse, most practitioners who are knowledgeable in the subject seem to be very reluctant to share the information and will instead choose to dole out the same vapid tidbits of commonplace data.

The biggest concern of all, it seems, is the liability that a typical healthcare practitioner would face should the information they share be misconstrued. Another, even more serious issue is what seems to be the disconnect between the front-line scientific knowledge provided by the research community and a typical practitioner. In all but a handful of cases, the staff appear to be versed well in all sorts of recommendations provided by the National Institute of Health, American Association of Pediatrics and other professional boards but seem to have little interest in researching the sources that might have led to making those recommendations in the first place.

While the first problem may be alleviated partially or completely by the rapport that one could establish with a particular doctor, the second issue of the “doctors blindly following orders” has no magical formula to resolve.

As an example, consider the case of the current treatment practices of newborns, which were diagnosed with central apnea and consequently kept or readmitted in hospital for further evaluation. One particularly acute question that should inevitably arise, once the child is discharged from the hospital, is whether further home monitoring should be continued at home setting. Until recently, the following categories of children would be discharged with a cardio-respiratory monitor:

1. infants who have experienced an ALTE
   
2. infants with neurologic or metabolic disorders affecting respiratory control
   
3. siblings of infants who died of SIDS
   

Recently, however, the AAP has further restricted its recommendations on the usage of home monitoring:

“There is no evidence that home cardiorespiratory monitoring can provide warning in time for intervention to prevent sudden death, or that intervention would be successful in preventing unexpected death.”

How exactly home monitoring could not provide warning in time for intervention? Apparently, the AAP presents two studies that allegedly support the claim: MacKay et al and Ward SL et al. Looking into the aforementioned studies gives us clues into to how the claims made by the AAP originated and the arguments that purport to support them.

Consider, for example the interpretation that the researches in MacKay et al give to the accounts of parental actions following apneic episodes during home monitoring:

“Where vigorous action was taken many parents felt that this had been life saving. Although parents were convinced that the outcome would have been different had they not been alerted by alarms, we cannot be certain that a fatal outcome was averted.”

The researches then conclude their suspicion of parental accounts with the following:

“The fact that death has been reported during monitoring for apnoea indicates that this possible means of prevention is, at best, limited.”

And that’s all there is: if death has been reported during monitoring, its utility comes into question.

The other study is even more informative in terms of how its content is interpreted by the AAP. Not only does the study presents data that run contrary to AAP’s interpretation, it makes an explicit note of its findings that leaves no doubt as to how the researches meant those results to be interpreted:

“Those infants who had monitoring recommended were at equal risk of dying of SIDS as those who did not. However, these results need not necessarily be interpreted to mean that home monitoring is ineffective. Infants who had monitoring recommended are those considered to be at highest risk for SIDS. Therefore, equivalent SIDS death rates may be the result of an improved outlook in the monitored infants. “

Overall, this short discourse provides a vivid example of how cautious one should be relying solely on AAP’s or similar policies and how appreciative we should be of those doctors who dare use their judgment based on clinical experience, professional curiosity and solid knowledge of existing corpus of medical research.

If you find such a doctor, share the word.