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RESPONSE TO SAVE THE CHILDREN REPORT CLAIMING MOST ORPHANS HAVE LIVING PARENT (November 2009)We do not have to travel far from the UK to find that children are put in orphanages not because they are parentless but because parents are not given sufficient support to enable them to raise the children themselves. The report states that 98% of children in residential care in central and Eastern Europe have at least one living parent. Many children are given up by their parents because of lack of economic support but many others, too, are given up as a result of misguided information about treatable health conditions. Paul O’Grady, a Save the Children Ambassador is entirely correct in his assertion that “families around the world should be supported to stay together, and more needs to be done stop children being put into care unnecessarily." Our charity aims to improve the treatment for cleft lip and palate throughout Europe and in many cases we are finding that babies end up in care not because of lack of available surgery but because health professionals present at the time of birth encourage parents to give their babies up because they are told they will not be able to feed them. Expereince in the UK has shown that with some initial nursing support nearly all babies born with clefts can be fed at home with a soft, squeezable, bottle or teat. It is entirely right that we should be concerned with state of orphanages but we also need to look far closer at the circumstances that lead to babies ending up in care in the first place. WORKING WITH UNICEF (BULGARIA)The European Cleft Organisation (ECO) is working with UNICEF in Bulgaria to try to push for better post-natal care for a range of medical conditions, including cleft lip and palate. ECO Executive Director, Gareth Davies met with UNICEF (Bulgaria) Director, Octavian Bivol, in March 2009 and agreed that a meeting with the Ministry of Health should be sought. Prior to any meeting taking place, ECO was asked to provide some factual evidence in the form of a survey of parents’ experiences around the time of the birth of their child (see below). A change in government in Bulgaria in July has meant that a meeting will be delayed but ECO hopes to be use the opportunity of a change in personnel at the Ministry of Health to get cleft lip and palate high on the agenda.
BULGARIA - 40% OF PARENTS OF CLEFT CHILDREN "ENCOURAGED TO PUT THEIR CHILD IN CARE AFTER BIRTH" A survey carried out by the Bulgarian patient group ALA has found that more than a third of all parents of cleft children were encouraged to abandon their children after birth "as it would be too difficult to care for them at home". There was a complete lack of information amongst most front line health professionals about treatment options and with no feeding support babies were routinely tube fed meaning that they couldn’t go home. It is estimated that around 30% of children born with clefts in Bulgaria end up in orphanages. A full report of the survey, which was carried out on behalf of ECO for UNICEF, is available by email. BABY BOY WITH A CLEFT PALATE SENT TO ORPHANAGE AFTER BIRTH Here is a case history we have just received from one of our projects in Bulgaria. We have been helping to train specialist nurses and have funded a website for the parent support group, ALA:
"... the doctors at the maternity unit insisted that the best way of feeding the Mario was to insert a nasogastric (NG) tube and send himr to an orphanage where the medical team would look after him. The mother was not given any ch Tahimira now at home with 12-month-old Mario SPECIALIST NURSE BECOMES PRESIDENT OF CRANIOFACIAL SOCIETY OF GREAT BRITAIN AND IRELAND (CFSGBI) Trisha Bannister, Consultant Nurse Specialist at the cleft unit in Manchester, UK, became President of the CFSGBI in April 2009. The Society, which holds a major scientific conference each year, is unique in that its membership is drawn from all disciplines involved with cleft care. This is the first time a president has come from a nursing background. NEW WEBSITE FOR UK CLEFT LIP AND PALATE ASSOCIATION (CLAPA) CLAPA has a new website and has introduced a free membership scheme. Check out www.clapa.com
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oice in the decision. The parents started to look for information and found ALA's website. With difficulty they managed to take their Mario, with a nurse from the orphanage, for a consultation with the multidisciplinary team. During the consultation the specialist nurse [trained by the European Cleft Organisation] taught the mother to feed her son with a bottle with no problems. However, back at the orphanage, the staff refused to feed Mario by mouth despite the recommendqtions of the specialist nurse and the wishes of the mother. After three days, with some pressure from the local media, the family were allowed to take their Mario out of the orphanage and look after him at home. Each month the family lets us know how things are going so we can provide help if needed. The family went trhough a very traumatic time and are really grateful for the help from our team"
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