Surgery Not Enough for Children with Cleft Lip and Palate

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Transforming Faces Worldwide and the European Cleft Organisation release a statement about the need for multidisciplinary care in treating cleft lip and palate for children in developing countries around the world.

"We have seen first-hand, year after year, the transformation that takes place in children and their families when they can access long-term multidisciplinary cleft treatment."

The recent abandoned merger between The Smile Train and Operation Smile has brought about heightened public awareness of the condition of cleft lip and palate. Supported by extensive experience working with children born with clefts in several countries around the world, Transforming Faces Worldwide and the European Cleft Organisation feel strongly that any dialogue on cleft care management must highlight the wider needs of children born with clefts.

People born in the developed world with a cleft, or a parent of a child with a cleft, will understand that surgical repair is an essential first step to treatment but that it will not, in most cases, result in complete success. Input from a multidisciplinary team over many years is necessary and should include specialist nursing, speech and language therapy, and orthodontic treatment in addition to surgery. The Oscar-winning film, "The King's Speech" demonstrates how long-term speech therapy in particular can change lives, not simply for patients but for those around them.

The American Cleft Palate-Craniofacial Association enshrines the need for interdisciplinary care on its website's home page. It is what is available to most children in the developed world but still only a distant hope for those outside it.

There exists a mistaken perception that a single surgery does the job to change a child's life. Many who donate to cleft charities believe this to be the case. The reality is that while much has been achieved in providing children with reconstructive surgery, there is still much more to be done so these children are able to eat, speak, perform at school and live a normal life.

All our sister organizations at the local and international level urgently need to work together to address how those tens of thousands of surgeries can be effectively followed up so that children and young adults have the chance to experience life to the fullest.

We have seen first-hand, year after year, the transformation that takes place in children and their families when they can access long-term multidisciplinary cleft treatment. We hope the current publicity leads to debate that inspires new standards across the board in international cleft care. We envision treatment that doesn't start and stop with surgery, but that embraces the extensive follow-up care that every baby born with a cleft needs and deserves.

A registered Canadian charity, Transforming Faces Worldwide provides access to free local multidisciplinary treatment for cleft lip and palate, and other craniofacial conditions, in nine countries around the world.

The European Cleft Organisation is a non-profit organisation promoting the advancement of medical expertise and standards of care in the treatment of cleft lip and palate in Europe

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Marianne Chilco
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