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At the beginning of last year the European Cleft Organisation (ECO) launched a formal proposal to develop a European Standard in the early management of babies born with clefts in an attempt to halt the abandonment of babies with clefts in some parts of Europe.
Whilst our proposal was widely supported, some countries had concerns that the introduction of a standard could interfere with local practice and go against national health policies.
ECO is trying to establish a European Standard in the care of babies born with clefts . Product standards at national and European level have been around for decades and are universally understood and accepted (product kite marks, such as BSI in the UK and CE in Europe). In recent years the European Standards Office in Brussels has also been focusing on service standards. The European Commission has been keen to encourage this and over the past year CEN has been expanding its work to cover aspects of healthcare service delivery. SEE UPDATE
Cleft means 'split' or 'separation'. During early pregnancy separate areas of the face develop individually and then join together. If some parts do not join properly the result is a cleft, the type and severity of which can vary.
Lilyana is tiny for her age – nearly four, but looking two. She lives in an orphanage in Bulgaria, where an estimated third of all babies born with clefts are abandoned by their parents and end up in the care system; usually for life. Good cleft surgery is available in Bulgaria, but many babies are abandoned through plain ignorance. We suspect similar human tragedies are happening in other countries in the region.
Our charity currently employs just one staff member who, as well as coordinating overall activities, is directly involved with country projects and training programmes. All board members are volunteers. The task ahead of us is huge but we have secure funding only to mid 2011
