When SIDS touches your life, you learn things you didn’t know before.  These are things I wish I had known about SIDS.

1.  SIDS isn’t accidental suffocation.  It is not a euphemism for a sleeping accident.  It is not a virus.  It’s not even really a “syndrome”.  SIDS is a diagnosis of exclusion.  If absolutely no cause for the death in an otherwise healthy infant can be found, then it is categorised as SIDS.  For this reason autopsies on SIDS babies can typically take up to a year, whilst every possible cause is painstakingly ruled out.  Babies aren’t described as dying from SIDS, they die by SIDS.   SIDS is the medical noun given to “we really don’t know”.

2. Whilst a SIDS death will typically occur between 2 and 4 months of age, it can occur earlier and later.   When a child over the age of 1 dies suddenly and for no apparent reason, it is called sudden unexplained death in childhood (SUDC).  It is much rarer, but it does still occur.

3. SIDS still occurs.  The “back to sleep” campaign drastically reduced the incidence of SIDS, but it remains the leading cause of death in infants aged 1 month to a year.  Despite years of research, it remains unpredictable.

4.  The triple risk model has been accepted as a description as to what happens when a baby dies by SIDS. The first element is baby’s age – between 2 and 4 being the greatest risk window.     The second element is the vulnerable infant.  This represents an infant with an underlying abnormality in an area of their brain stem that controls respiration, heart rate, temperature, arousal from sleep and other major bodily functions during early life.   The third element involves outside or environmental challenges which a normal baby can easily overcome and survive, but that an already vulnerable baby cannot. Challenges such as tobacco exposure, tummy sleeping, soft bedding, bed sharing or an upper respiratory infection alone do not cause death for healthy infants, but could trigger a sudden, unexpected death in a vulnerable infant.

In most SIDS deaths at least two of these elements are present.   There is a big difference between the second element and accidental suffocation.   I want to make this point clear as SIDS parents all struggle with guilt and the fear that it was something they did or did not do.   The environmental factors described would only affect a child with a pre-existing  propensity towards SIDS. Hence why so many older people scoff “my babies slept on their tummies and were fine”.   The majority of babies WILL be fine – you just can’t tell the ones who won’t.  Accidental suffocation occurs when the baby is robbed of oxygen because they are smothered.  This is not what occurs in a SIDS death.

Unfortunately, there is no way to identify a vulnerable infant – they appear healthy until SIDS steals them away.  This is where more research is needed.

5.  Whilst every parent should follow the safe sleep guidelines, they do not guarantee safety.  They certainly reduce risk, but they do not eliminate risk.   A little like a very safe driver will certainly reduce their risk of being in an accident, but there is no way to completely ensure that driver won’t be in an accident.   Just as the incredibly bad driver can go their entire driving life without an accident.

The safe sleep guidelines extend beyond just ensuring baby is on their back to sleep.  The guidelines are:

• Sleep baby on the back from birth, not on the tummy or side
• Sleep baby with head and face uncovered
• Keep baby smoke free before birth and after
• Provide a safe sleeping environment night and day – this means no toys, no excess blankets, no pillows, no cut bumpers etc.  No sleep aides are recommended by SIDS and kids – this includes sleep positioners.
• Sleep baby in their own safe sleeping place in the same room as an adult caregiver for the first six to twelve months
• Breastfeed baby

For those that are anxious about SIDS, a movement monitor also offers some measure of comfort, although they are not specifically recommended by SIDS & Kids as part of the safe sleeping guidelines.

There is evidence to suggest co-sleeping reduces the chance of SIDS deaths. There is evidence to suggest it increases the chances of SIDS deaths (particularly in western societies).   It can be difficult to follow the safe sleep environment rules in an adult bed.  Mattresses tend to be softer, it can be difficult to rid the sleeping space of excess blankets and pillows.  A cot specifically designed to attach to an adult bed can be a good compromise – allowing proximity to baby whist maintaining a safe sleep environment.

6.  A parent who has lost their baby to SIDS doesn’t fit a particular profile.  SIDS doesn’t care what you earn, how educated you are, how happy your family is or whether you are good or poor parent.   We always want to put distance between ourselves and tragedy – we want to believe that we are protected from bad things happening.  Unfortunately that belief does not provide any protection, nor does judging a person who has lost their precious child to SIDS.

If you would like to support those that have lost their babies to SIDS, you can make a donation to SIDS & Kids Queensland – http://www.everydayhero.com.au/xaviermay

If you would like to support research into the cause of SIDS, please support Rivers Gift – http://www.riversgift.com