THE GIFT OF A SMILE
Every three minutes a child with a cleft lip or palate is born. One in 10 will die before their first birthday, the rest hide their faces in shame. Now they have a reason to smile thanks to free surgery, discovers Shiva Kumar Thekkepat
Morag CromeyHawke inhabits a world without smiles. As executive director of Operation Smile UAE, she is used to seeing glum faces every day as she sorts through the list of applications from parents of babies, toddlers and children born with a cleft lip or palate who can’t afford an operation to address the problem.
Karl is just one example. His mother, Khenzel, was desperate to get her five-month-old son’s cleft lip repaired as soon as possible because she knew only too well the kind of indignity and cruelty he could be subject to as he grew up. That’s because the pretty 22-year-old mother had also been born with a cleft lip. Hers had fortunately been repaired 17 years earlier at an Operation Smile camp held in Davao, in the Philippines.
“I used to be embarrassed and isolated because of my cleft lip,” she says. “I still remember how I was made fun of because of it. I had very low self-esteem. I don’t want my son to suffer like I did as a child.”
Khenzel had trouble feeding Karl with a bottle because he was unable to suckle. Sometimes when he ate solid food, it came out of his nose.
According to Operation Smile one in 10 children born with a cleft will die before their first birthday.
The single mother and son travelled for about an hour from their home to reach the Operation Smile mission, which Khenzel had learned about from a TV advertisement. The night before the surgery, Karl was crying. “He cries sometimes when he’s hungry,” said Khenzel.
But when it was time for the surgery, it was Khenzel who cried. “I’m scared about what will happen during the surgery,” she said. She was nervous that Karl was too weak from hunger and might collapse.
When she saw him a few hours after the operation, his lip had been repaired. Relieved, Khenzel hugged Karl closely. “I love his new lip,” she said. The worried expression, however, never left her face.
Khenzel may continue to be a nervous mother, but she doesn’t have to worry about her son being picked on like she was any more. By repairing his cleft lip at an early age, Karl will never suffer like Khenzel once did.
Morag of Operation Smile UAE (OSUAE) wipes away a tear while talking about the case, just one of the 850 she’s handled since the formation of the local chapter in 2011.
“It’s such a wonderful story, and one that inspires me to go on working for Operation Smile,” she says. “The look in that child’s eyes before the operation, and a year after, tells the entire story of why the organisation is doing such a vital job.”
She adds, “Every three minutes a child is born with a cleft lip or palate somewhere in the world. And it is a world bereft of smiles, one of mockery and ridicule for such children.”
Ideally the condition is corrected when children are very young, but in developing countries where costs are too high and facilities are scarce such cases often go uncorrected.
Some of the babies and children have trouble eating because of severely deformed palates, and hence grow up undernourished and unhealthy. Most of them are rejected healthy and of a weight that can sustain anaesthesia.”
Cleft palates in the late teens are very difficult to mend because there will not be much soft tissue to work with. Preferably palates should be corrected before a child starts speaking so that their speech will be normal.
After early teens such patients will need an obturator to help them speak. These are typically short-term prosthetics made of polymers used to close defects of the hard/soft palate that may affect speech production or cause nasal regurgitation during feeding. “In the Philippines, during a mission one of the dentists asked a teenager there to speak to me and I found it very difficult to understand what he was saying,” says Morag. “A few minutes later he put the obturator into his mouth for the very first time and when the boy spoke to me the words were clear. It was incredible.”
‘The look in a child’s eyes before the operation and a year after tells the entire story of why this is vital’
and ostracised and grow up hiding themselves from society.
The exact cause of cleft lips and palates in children has not been identified yet. “What we do know is it happens in the first trimester of the pregnancy when the face begins to fuse together,” says Morag. “There is a genetic factor involved sometimes. There are environmental factors too. For instance, smoking in pregnant mothers increases chances of the child developing a cleft lip or palate. Vitamin B6 deficiency in pregnant women, too, can cause this. That’s why you see a lot of this in Third World countries where the diet is not sufficiently healthy.”
Though Karl was five months old, Morag says children should ideally be a little older. “We usually will not operate on children under nine months,” she says. “The upper limit is early teens. They also have to be
Morag’s entry into this world was accidental. She had been working as an educationist in Abu Dhabi when Shaikha Al Jazia Bint Saif Al Nahyan, wife of UAE Foreign Minister Shaikh Abdullah Bin Zayed Al Nahyan, told Morag about her desire to start a charity for children with facial deformities.
Morag researched organisations working in this field and came across Operation Smile, an international charity that operates in more than 60 countries worldwide.
She learnt that Operation Smile was established in North Virginia, US, in 1982 by Dr William P Magee and his wife Kathleen S Magee after
they participated in a camp in the Philippines and were overwhelmed by the number of people who couldn’t be treated due to lack of funds. Since then Operation Smile has conducted over 200,000 free surgeries.
“The shaika’s desire to help children with facial deformities was the reason we started OSUAE,” says Morag. The shaikha decided to found the UAE chapter and mandated Morag to run the organisation based in Abu Dhabi.
Explaining the initial steps, Morag says, “Operation Smile… ticked all the boxes for us, so we got in touch with relevant parties at the organisation to find out about setting up a foundation in the UAE. They were interested and asked me to go on one of their missions to see their operations. On June 10, 2010, I attended the mission in Morocco.”
The group operated on 144 children there in a week. The impact on Morag was huge. “Just the fact that an operation that lasted 45 minutes could make such an amazing change
‘These children are ostracised, teased… when you act normallywith themthey are distrustful’
in the children’s lives was truly transforming,” she says. “Seeing the children’s faces before the operation was an education in itself. The look in their eyes said ‘Why are you being nice to me when nobody else is?’ These children are ostracised, teased, shunned, laughed at, and when you act normally with them, they are surprised and distrustful. That affected me a lot. I felt we just had to do it.”
OSUAE was registered in January 2011, and in the three years since it has funded eight missions in various countries around the world such as the Philippines, Morocco, Jordan, India, China, and Vietnam.
Sadly, one mission planned for Egypt had to be postponed due to the unstable political situation in the country.
The size of the missions keep increasing as the number of children born with cleft lips is increasing all the time. “It is the fourth largest birth defect in children,” says Morag. “It occurs in one in 700 children in most countries, but can go up to one in 500 in certain areas. Nobody really knows why.”
OSUAE undertakes between two and three missions every year, all conducted with volunteers. “More than 50 per cent of the staff are international volunteers,” says Morag. “We also recruit volunteers within the UAE, among them plastic surgeons, paediatricians, dentists, speech therapists and anaesthesiologists. We have a bank of volunteers. Last week we had a volunteer going to a mission in Ghana and one to Jordan. Next week one of our volunteers is going on a mission to South Africa and in April we have one going to Morocco. So we are constantly sending out our volunteers recruited from here to missions across the world.
“Sometimes OSUAE funds an entire mission that can cover the cost of all the volunteers, the accommodation, medical equipment, and medicines. The human services are all free, done by volunteers. All the medical staff give up to 10 days of their time to volunteer missions.”
They are assisted by Operation Smile in the US, which has a network of over 5,500 medical volunteers, including craniofacial surgeons, plastic surgeons, paediatricians, anaesthetists, dentists, speech therapists and, of course, nurses.
What keeps Morag and the other volunteers so focused on helping these children are the dramatic results they see after every surgery.
“The last time we held a mission in Davao in the Philippines, we met a lovely three-year-old child called Janine Cassido,” says Morag. “She just smiled all the time. She had a huge gaping hole in her upper lip. But she was so happy. When I spoke to her mum she said they lived in a small community and everybody adored Janine. So she had no problem speaking to anybody because nobody made fun of her.
“Then there was Kurt who was also three, a beautiful little boy whose cleft lip was not as bad as Janine’s, but he’d been teased in the nursery school he went to and he’d learnt to lash out at everybody who reached out to him. When anybody spoke to him he would lash out and that would put everybody off. He became lonely. He was aggressive so that people wouldn’t be able to hurt him. It took us a few days before we could get him to submit to an examination. Once he learnt to trust us it was great. The two children were so different but they bonded very quickly. And to see their faces after the surgery was a real treat.”
While all its missions so far have been held in other countries, OSUAE plans to hold one in the UAE soon. “What we have found is there are a lot of children in the UAE with cleft conditions,” says Morag. “Just about every week we get an email or a phone call from a parent of a child with a cleft lip or palate asking for help.”
There is no database giving an idea of the number of such cases in the UAE. “We are helping to build that by getting in touch with insurance companies, hospitals, and also from people who contact us,” says Morag.
“We welcome people who know such cases in the UAE, and also cases that require revisions due to unsuccessful previous operations. We expect to do fewer than 20 operations in our first mission here, and it should be educational for the professionals here as well.”
The average cost of an operation for Operation Smile is Dh880. OSUAE conducts regular fundraisers to raise money for these missions.
Morag also hopes to make the countries they hold missions in self-sustainable in terms of medical expertise. All the medical missions train the local doctors in those countries. “Our aim is not only to help these children but also build sustainability in these countries so that they can handle such cases on their own,” says Morag. “Earlier there were only a handful of surgeons who could work on clefts, but now on every mission we help train local doctors to become experts. Panama is completely self-sustained now.”
Morag wants to build conferences and workshops around the mission to be held in the UAE, “so that our local professionals in the field can benefit from the expert volunteers who will visit. They can come, observe, and perhaps become a volunteer later with Operation Smile. We also want to develop the community spirit, and get everybody involved in raising awareness and funds. We’ll be funding a mission to operate on 120 children in Ethiopia in May and another mission to operate on 100 children in Vietnam in June.”
Morag gave up her career in education to run OSUAE and she doesn’t regret it. “I don’t see it as a career, I see it as a calling now,” she says. “It gives me much happiness to see the look on the children’s faces and also their families’ faces after the operation.”
More than their lips, it is their eyes that change,” she reflects. “They just light up so much that you forget to look down at the operated lip. And that, for me, is everything.”
Morag sees her work with OSUAE as a calling
A Filipino child and his grandmother both had their cleft lips operated on
Morag enjoyed interacting with children in Jordan
An Operation Smile mission in Jordan changes lives
Medical professionals volunteer their services to help OSUAE
OSUAE has conducted several missions in the Philippines
A child gets ready for surgery in Jordan