Early in 2015 ECO achieved its mission of developing a set of guidelines in early cleft care, agreed at a European level.
The guideline has been endorsed by the Committee for European Standardisation (CEN) in Brussels and was approved by an overwhelming majority of voting CEN member bodies across Europe. This has been a long process, beginning in 2011 and along the way we have had input from Austria, Belgium, Bulgaria, Estonia, Finland, France, Germany, Lithuania, Spain, Romania and the UK.
ECO is working with CEN to try to get the document publically available but for the moment it is available only from the National Members (standards offices) of CEN in 33 European countries. For contact details visit the CEN website:
There is now a proposal to organise a European workshop looking at how these guidelines can be implemented.
The Technical Report specifies recommendations for the care of babies born with cleft lip and/or cleft palate at time of diagnosis (ante- and/or postnatal) and the year following birth or diagnosis (whichever is later), including referral processes, establishment of feeding, parental support and care pathways.
Recommendations on all aspects of surgery, including timing and the use of pre surgical orthopaedics is excluded.
2. Terms and definitions
3. Diagnosis and referrals
4. Immediate post natal care
6. Monitoring the baby and preparation for surgery
7. Recommendations for involving and supporting parents
8. The longer term care pathway
9. Recommendations for the cleft unit team members and facility requirements
10. Recommendations for the organisation of the cleft service including clinical governance and audit
11. Information and education needs
12. Information production
Annex A – Types of cleft lip and/or palate
Annex B – Pierre Robin Sequence and treatment options
Annex C – Bottles and teats used for assisted feeding of babies with clefts
Annex iv Description of role of nurse specialising in cleft care
Annex v Sample form used for feeding assessment of babies with clefts
Annex vi Recommendations on treatment records