13 December 2012
An unacceptably high number of babies with a cleft palate are being diagnosed late, reveals a new report from the Royal College of Surgeons (RCS). The publication warns that early diagnosis is imperative as the delay results in avoidable distress for families as babies are left unable to feed and gain weight.
National standards state that clefts should be diagnosed within 24 hours of birth to enable immediate referral to a specialist hospital. This ensures the baby, and their family, receive appropriate care, help and support as soon as possible. The report highlights that 28 per cent of babies with a cleft that affects the roof of the mouth alone are diagnosed outside of this target, with 5 per cent remaining undiagnosed until after one month of age.
The CRANE database at the RCS collects information on all children born with a cleft lip and/or cleft palate in England, Wales and Northern Ireland. It urges that during the newborn examination, which is performed within 24 hours of birth, babies must be checked thoroughly as this is the first opportunity to identify a cleft palate. The report calls for national and local guidelines for examining newborns to be reviewed to reduce the risk of a missed diagnosis.
The report reveals that late diagnosis of cleft palates varies substantially across the country, indicating that some maternity units are better than others at identifying clefts during the newborn examination. For example, only 42 per cent of cleft palates were identified within 24 hours of birth in the North Thames area, whereas more than 94 per cent were identified at birth in the Oxford area.
Craniofacial abnormalities such as a cleft lip and/or palate are among the most common of all birth defects, affecting over 1000 babies in the UK each year. Of these, approximately 45 per cent have a cleft affecting only the palate. Unlike other types of cleft which affect the lip, identification of a cleft palate is extremely difficult through an ultrasound examination during pregnancy, with only 1 per cent diagnosed this way.
Scott Deacon, Lead Consultant Orthodontist and Clinical Lead of the CRANE database, said:
“We rely on the roof of our mouth to eat, talk and do many other things we take for granted. A cleft palate is a serious condition as it can leave babies unable to feed and gain weight; it can also be indicative of other health problems. It is crucial that a thorough visual examination of the mouth and palate is carried out within 24 hours of birth to ensure the baby, and their family, receives the care and support they need from the outset.”
Rona Slator, Consultant Plastic Surgeon and Clinical Director of West Midlands Cleft Service, added:
“A cleft has wide-ranging implications for a child’s health, and is certainly not just an aesthetic condition. All babies with a cleft will need surgical treatment once they are old enough, but prior to this the newborn, and their family, will require special bottles, guidance and help with feeding. Early diagnosis really is imperative.”
Although only 71 per cent of cleft palates were identified at birth in 2011, this is 4 per cent higher than in 2010 when one third of babies with a cleft palate had their condition missed at birth. While this suggests that there is progress in this area, further improvement is necessary.
Since 2000, cleft services have been reorganised into 15 specialist cleft hospitals across England and Wales. This ensures that all patients receive specialist care and treatment from an experienced multidisciplinary team of health professionals including surgeons, nurses, orthodontists, speech and language therapists and psychologists. Research by CRANE has shown that all babies with a cleft are now being treated in highly specialised centres, demonstrating the success of the national reorganisation of cleft services.
Rosanna Preston, CEO of the Cleft Lip and Palate Association (CLAPA), 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. Once the cleft palate has been diagnosed CLAPA helps to support them through the emotional and practical issues with specialist feeding equipment and a network of trained parent contacts who have been through the same situation.”
A copy of the full report can be found here.
The CRANE Database is a national register that was established in 2000 to collect information on those born with a cleft lip and/or palate in England, Wales and Northern Ireland. The Database collects birth, demographic and cleft diagnosis information. It also collects information about cleft-related treatment and outcomes. The database is funded by the National Health Service through the Specialist Service Commissioners, who have responsibility for the delivery of care to children born with cleft lip and palate in England and Wales. An independent body, the Cleft Development Board, which represents patient groups, clinicians and commissioners, has the overall responsibility for running the database.
The Royal College of Surgeons of England is committed to enabling surgeons to achieve and maintain the highest standards of surgical practice and patient care. Registered charity number: 212808
For more information, please contact the RCS press office on:
• 020 7869 6047/ 6052
• Out-of hours: 07966 486 832
CLAPA is the only UK-wide voluntary organisation specifically helping those with, and affected by, cleft lip and palate. For more information, please go to www.clapa.com or call 020 7833 4883.