Statement from the Foundation for the Study of Infant Deaths in response to the ONS release of figures for sudden infant deaths.

The Foundation for the Study of Infant Deaths (FSID) welcomes today’s announcement from the Office for National Statistics (ONS) that deaths in England and Wales categorised as Sudden Infant Death (SID) dropped in 2003 by 13%.  However, there is a serious question over the basis for ONS figures.  ONS figures do not include sudden infant deaths whose cause is registered as “unascertained”.  Whereas Scotland and Northern Ireland do include “unascertained” deaths in the SID category, ONS excludes them.

Pathologists in recent years have increasingly been using the term “unascertained” instead of SID or similar term - its use rose from 7% of in 1997 to 40% in 2003.  A study by FSID published earlier this year (1)  found that 68% of pathologists say  they may use the term “unascertained” if the death occurred while bedsharing.  As bedsharing, especially if the parent is a smoker, is one of the Department of Health’s officially-declared risk factors for cot death, it is perverse for pathologists to call it something else if the death occurred while bedsharing.

Perhaps more worrying is that 66% of pathologists say they may use the term “unascertained” immediately after the post mortem examination if they are suspicious that the cause of death was unnatural.  This label, which thus attaches an unproven stigma to the death, is usually applied by the pathologist in the absence of a comprehensive multi-agency review of the case including the taking of a thorough medical history from the family.  The report found that forensic and general pathologists used the term “unascertained” more often than paediatric pathologists. FSID has been campaigning since 2000 for all sudden infant deaths to be investigated according to a standard protocol (2), in which not only the pathologist, but also the paediatrician, GP, health visitor, and other medical and judicial professionals involved with the family or the investigation of the death review all the information available, before labelling the death. 

Joyce Epstein, Director of FSID, said

“There needs to be better consistency and agreement about sudden infant deaths and the labels used by different agencies and professionals to describe these deaths.  It is confusing and extremely unsatisfactory for families for a death in one part of the UK to be recognised as a natural tragedy, and a similar death in another part to have a question mark over it.  There must be a compulsory system of standard investigations and registrations of deaths, which reflects the informed and mutually-agreed judgement of all the medical and judicial professionals involved in the case.”

The ONS figures refer only to England and Wales . UK-wide, the number of sudden unexpected deaths in 2003, including those categorised as unascertained, was 354.

1.      SR Limerick and CJ Bacon, Terminology used by pathologists in reporting in sudden infant deaths.  Journal of Clinical Pathology.  2004; 57: 309-311.

  2.  FSID has been campaigning for the following multi-agency protocol to be adopted when a baby dies suddenly and unexpectedly:

• Within 24 hours a paediatrician, working with the police, should visit the family at home, take a complete medical history, and offer initial support;
• the post mortem should be conducted by a paediatric pathologist who has access to the information gathered in the home visit;
• all the health and judicial professionals involved should meet and review the available information to agree what factors may have contributed to the baby’s death and plan future support.
  
  

FSID’s Helpline number is: 0870 787 0554.

The advice to reduce the risk of cot death:

·          Cut smoking in pregnancy - fathers too!

·          Do not let anyone smoke in the same room as your baby

·          Place your baby on the back to sleep

·          Do not let your baby get too hot

·          Keep baby’s head uncovered - place your baby with their feet to the foot of the cot, to prevent wriggling down under the covers

·          If your baby is unwell, seek medical advice promptly

·          The safest place for your baby to sleep is in a cot in your room for the first six months

·          Do not share a bed with your baby if you or your partner:  

·          are smokers (no matter where or when you smoke)

·          have been drinking alcohol

·          take medication or drugs that make you drowsy

·          feel very tired.

·          Never sleep with a baby on a sofa or armchair

There is also a risk that you might roll over in your sleep and suffocate your baby, or that your baby could get caught between the wall and the bed, or could roll out of an adult bed and be injured.

  (20/8/04)