Mission for cleft-lipped kids goes beyond surgery

NINE-YEAR-OLD Clarisse Sullano confidently counted one to 10 and named the pictures of objects that were flashed before her on a laptop by a therapist.

While she had a bit of trouble articulating words that started with the letter “s,” Clarisse hardly sounded the way she did more than three years ago—incoherent and nasal, and only her mother could understand her.

Clarisse was born with a cleft palate and a cleft lip, a birth defect characterized by facial and oral malformations. The condition caused her speech problems.

But thanks to Operation Smile, she is now on the path to a normal life and a childhood without the taunts and the curious looks from strangers.

The Virginia-based medical service group annually slates missions to various parts of the Philippines, offering free and safe surgery to children with cleft lip, cleft palate and other facial deformities.

Three sites

For its first mission this year, Operation Smile brought its team of surgeons, physicians, nurses and technicians to three sites—Dasmariñas, Cavite province; Cauayan, Isabela province; and Koronadal, South Cotabato province—operating on roughly 300 indigent patients.

The mission on Feb. 21 to 26 was organized in partnership with Johnson & Johnson Philippines, which sponsored the operation and treatment of 60 poor children with cleft palate and cleft lip to mark its 60th anniversary in the country.

Clarisse, who had undergone two reconstructive surgeries by Operation Smile since 2012, traveled all the way from Cebu to St. Paul Hospital in Dasmariñas on Tuesday with her grandaunt, Elaine Sullano, to get a palatal obturator installed in her mouth for free.

The device is a short-term prosthetics used to close defects of the palate that affect speech production.

“Wherever the mission of Operation Smile is, my grandniece goes because she wants to get better,” Sullano said, as a dentist and a speech therapist examined Clarisse.

“We learned that one of the missions will be here in Cavite so we came here, although she will be absent from school for a while,” she added.

Sullano said she believes that with the newly installed mouth appliance combined with regular speech therapy, Clarisse will finally start to fit in and regain the confidence she lost at a very young age due to her congenital condition, which afflicts one in every 500 newborns annually in the Philippines.

Wide array of services

For children like Clarisse, surgery is just the beginning of a journey to recovery and a normal life.

It is for this reason that Operation Smile also provides a wide array of services, such as dental exam, speech therapy and education program, that will help in the rehabilitation and reintegration of patients into their communities, said Gian Trebol, executive director of the international charity group in the Philippines.

“Throughout its 34 years, Operation Smile has developed a very solid and comprehensive cleft care program that involves multispecialties and that doesn’t involve surgery alone,” Trebol said in an interview with the Inquirer.

“Speech therapy is very important because even if we operate on the patients but if they still speak nasally, [they will continue to be ridiculed],” he said.

Speech therapist Paolo Mangune, a volunteer at Operation Smile, said that after the surgical repair of the lip and palate, patients need to unlearn the speech production mechanism they mastered when they still had the deformity.

“Surgical repair would not guarantee functional outcomes when it comes to speech so they have to learn a new mechanism once the problem has been fixed,” said Mangune, who assessed Clarisse on her first therapy session on Tuesday.

Progress generally depends on the age of the patients and their persistence to do speech exercises at home, he said.

Age for repair

Experts usually recommend that cleft palate repair be done not later than 2 years old so that therapy can immediately follow, as speech and language development is most crucial between 2 and 7 years old, Mangune said.

“I also always tell my patients that if they don’t do the exercises at home, it won’t work even if we see them an hour every week,” said Julia Ajero, another volunteer speech therapist.

It was Ajero’s first mission as a professional but she has long been exposed to the work of Operation Smile, where her mother does administrative work.

Ajero said she was drawn to serve because she yearned for children with facial and oral deformities to be able to fully outgrow their defects.

“It doesn’t stop at surgery … what we want is for them to be OK with their speech, to be fully functional so that they will no longer be bullied in school, so that they will not have to quit school and will not be ashamed to recite in class,” she said.

At 18, redemption may have come a bit late for Noriel Manimtim, afflicted with both cleft lip and cleft palate, but on Tuesday, he just got a shot at life brimming with new possibilities aside from endless days of fishing in a river near his home in Tayabas, Quezon province.

Doctors were able to fix the deformity on his lip that extended to his nose, which drew heartbreaking jeers and bullying from classmates and friends that eventually forced him to quit school when he was in Grade 5.

His father, Numeriano Manimtim, said they were told that while fixing his palate would no longer be helpful at his age, an obturator and speech therapy would help improve his speech.

“This is the first time that we heard about Operation Smile and that they are providing free surgery. So when we learned about it, my son was so excited to come here,” said Manimtim, a tricycle driver.

He said his son didn’t like venturing out so much because he was ashamed of his looks and how he talks but he did not mind traveling more than three hours to get free surgery in Cavite.

“My only dream for my son is for him to finish his studies and to be able to get a good job. I am just happy that he has been given hope,” he said, crying.

But Noriel has other plans once he finally gets better: He will serve as a soldier in the military.

It is stories like Noriel’s that drive Operation Smile to continue exploring innovations that will help it reach patients faster and at an earlier age, when chances of full restoration are still high.

Trebol said the organization recently partnered with telecommunications giant Smart and the Integrated Midwives Association of the Philippines for a mobile application that would create the first database of people with cleft lip, cleft palate and other facial deformities in the Philippines.

“The mobile application will enable anybody in the Philippines to register a patient if they see one. You can input their data and take their picture and these go to a cloud, a central database that we have access to so that we will know where the patients are,” he said.

Operation Smile will roll out the new mobile application within the next two months, he added.

The database will help the group catch up with the backlog on facial deformity operations, he said, noting that close to 100,000 patients across the country needed help.

In the Philippines, a child is born with a cleft deformity every three minutes or roughly 4,000 every year. “A small percentage of that don’t even live to see their first birthday,” Trebol said.

Operation Smile is also studying programs that will provide psychosocial intervention and support so that older patients like Noriel can be integrated back into society, he said.

“We really care about our patients … and what we give them really is hope for a better future,” he added.