First UAE database of people with cleft palates to be set up

ABU DHABI // A database of children and adults who have a cleft lip or palate is to be established in the UAE.

Charity Operation Smile UAE is looking to compile information on how many people are affected by the condition, where a part of the lip or palate inside the mouth is missing.

Following a screening process, the charity also hopes to offer surgery to a group of suitable people in February next year, in conjunction with an as-yet-unnamed hospital in the UAE.

"We are looking for patients within the UAE who have got problems with cleft lips and cleft palates and who cannot afford the surgery, or perhaps have had surgery and that hasn't worked," said Morag Cromey-Hawke, the executive director of Operation Smile UAE.

"We will be looking at everybody that would like to be screened but our focus will be on people who cannot afford or are not covered by their insurance."

The UAE arm of the international charity was established in January 2011 under the patronage of Sheikha Aljazia bint Saif, wife of Sheikh Abdullah bin Zayed, the Minister of Foreign Affairs.

It recruits medical volunteers to go on missions abroad and raises funds in the UAE. This would be the first time it has provided surgery here.

The aim is for experts from overseas, who have worked with the organisation before, to take part in the project. They would work alongside UAE-based medical professionals, such as doctors, nurses and speech and language therapists, to pass on their knowledge.

"There will be some that are observing and the idea is to do some conferences and workshops before, during and after the mission so that we can extend the knowledge and experience of medical staff within the UAE," explained Mrs Cromey-Hawke.

Screening, surgery and aftercare will make up the mission, which will involve about 16 patients and two days of operations. It will be available for both children and adults.

Mrs Cromey-Hawke is urging people who have the condition, or whose children have it, to get in touch.

"Just in the last month already there has been three or four people who are either pregnant or just given birth that have babies with clefts who have contacted Operation Smile," she said.

Internationally, the condition affects about one in every 500 to 700 babies and it can cause difficulty feeding. One in 10 babies affected do not reach their first birthday.

It affects all nationalities but occurs more often in children of Asian, Latino or Native American descent, the charity said.

The exact cause of cleft lips and palates is unknown but they are congenital defects that occur early in embryonic development. Scientists believe a combination of genetic and environmental factors, such as maternal illness, drugs, or malnutrition may lead to the defects.

The charity wants to provide support to people affected by clefts in the UAE.

"We want to actually help people that have had operations done before, that have got cleft conditions, to offer them advice, guidance and care. We are hoping to set up a parent support group," said Mrs Cromey-Hawke.

When parents find out their babies have clefts, they are often frightened, she said, as well as anxious that they won't know how to feed them or get the support they need.

It is also hoped that speech and language therapy sessions, to help children improve their speech, will be run.

Venezuelan Luis Navas, who moved to Abu Dhabi two years ago, knows just how important the work of Operation Smile is.

The 41-year-old's daughter Gia was born with a cleft lip and palate in Venezuela. The cement engineer was able to pay for the first operation when his daughter was six months old, and the charity paid for the following two when she turned six and 10.

Gia, now 12, needs further surgery to close up her palate and her father hopes that she will be operated on next year, as part of the charity's UAE mission.

"My insurance doesn't cover it (the operation). I would have to pay for it," he said.

After establishing what the need is in the UAE, the charity hopes to offer surgery in many hospitals in the future, as well as continuing to fund missions overseas.

Contact Operation Smile UAE by emailing [e-mail] or by calling the Abu Dhabi office on 02 658 4790.