CRANE Publishes Findings of Annual Report

December 13, 2012

The latest Annual Report from the CRANE database has shown an unacceptably high percentage of babies with cleft palate being diagnosed after the 24-hour mark.

 The CRANE Database was set up in 2000 in order to collect information on children born with a cleft lip and/or palate in England, Wales and Northern Ireland. The Database has two broad aims:

  1. To register birth and demographic data about all children born in England, Wales and Northern Ireland with a cleft lip and/or palate.
  2. To record the treatment of these children and adults with a cleft lip and/or palate, and the outcomes of such treatment.

The latest report from the Database focuses mainly on children born in 2011, and found that while national standards state that clefts should be diagnosed within 24 hours of birth so families can be referred to specialist services, around 28% of babies with a cleft palate are diagnosed after this time, with 5% still undiagnosed after they are one month old.

This is an unacceptably high level of late diagnosis, which leads to distress for families that could be avoided as babies are often unable to feed correctly or gain weight, and a cleft palate can also be a symptom of other conditions.

CRANE are calling for these national and local guidelines to be reviewed to reduce the risk of missed diagnosis. It is important that the examination of a newborn is carried out thoroughly – with a visual examination of the mouth and palate – to bring down the percentage of babies that are diagnosed late.

Rosanna Preston, our Chief Executive, said: “For any parent, noticing that your baby is not eating, feeding properly or gaining weight is terribly worrying. Many parents will initially blame themselves until the cause is found and worries about their baby’s health can affect those crucial early days of bonding; the sooner they can get support the better.”

CLAPA is constantly working to raise awareness of cleft lip and palate, both among health professionals and wider society, and part of our 2012 Conference focused on the late diagnosis of cleft palate. We are pleased that this important issue is being highlighted and we hope that this push for publicity means that far fewer parents have to wait for a diagnosis, and can instead begin to receive the fantastic support on offer from both CLAPA and the 14 specialist Cleft Teams across England and Wales.

Read more about this and watch interviews with some of the parents in our Facebook Support Group on the following news sites: