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

Friday - - Making Difference -

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

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