Chattanooga couple taking cleft palate non-profit effort to Zimbabwe [photos]

Chattanooga couple taking cleft palate non-profit effort to Zimbabwe [photos]

May 27th, 2017 by Tyler Jett in Local Regional News

Photos of family and children helped by their charity hang on the wall of Santhosh and Susan Mathew's dining room. Santhosh and Susan Mathews run a non-profit that pays for medical camps and cleft palate surgeries around the world.

Photo by Robin Rudd /Times Free Press.

Gallery: Chattanooga couple taking cleft palate non-profit effort to Zimbabwe

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The first time he peeled the blanket from the right side of his baby's face, Santhosh Mathews was not proud of how he felt.

His firstborn, Philip, was missing an eye and an ear. His mouth was split down the middle, the result of a cleft lip and palate. Internally, the problems were worse. He had holes in his heart, and he was missing his corpus callosum, the bond of nerve fibers that join the brain's two hemispheres.

When Mathews looked at his child in Erlanger hospital in July 2000, his legs felt weak. In front of his wife, Susan, he tried not to cry.

"It was unnatural," he said of his son's appearance. "It was not human, so to speak."

Slowly, Philip progressed. The holes in his heart closed. A surgeon repaired his lip, then his palate. Another surgeon gave him a prosthetic eye and ear. He went to Siskin Children's Institute for speech, occupational and physical therapies.

Santhosh and Susan, however, didn't heal so concretely. Deep down, they thought their son was a curse from God. Susan thought she hadn't worshipped enough; Santhosh thought he had sinned too much. Strangers stared, and friends wondered whether Susan had done something unhealthy during pregnancy — taking an obscure antibiotic, maybe, or lingering near radiology for too long at her job as a nurse. Both parents were suicidal.

"You go into a pit," Susan said of her feelings at the time.

But they healed, too, eventually. A friend gave them what they considered to be a divine word, a message about Jesus and a blind man and how afflictions are sometimes used to show God's power.

In 2007, Santhosh watched a documentary about children in developing countries with cleft lips. He heard about a town where, like him and his wife, people viewed the genetic defect as a literal curse from a higher power. The group tied a girl to a tree and stoned her.

"I'm looking at my son," he said. "And I'm wondering, 'How many such children are being tortured today? How many such children are being killed today?' It just burned like a fire within me."

Ten years later, Santhosh and Susan are running a nonprofit, Love Without Reason, aimed at connecting surgeons to children with cleft lips and palates in rural parts of southern India. They said they have hosted 45 medical camps and orchestrated 300 surgeries.

On June 7, they're leaving again, this time for a new destination: Zimbabwe. Over six days, they hope, doctors will perform 60 surgeries.

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Santhosh and Susan's first steps into their nonprofit were mistakes. Five years of missteps. Santhosh returned to Karnataka, a state in southwestern India where he lived until 1999, two years after he married Susan. (Susan's family is also from India, though her father moved here to study at Tennessee Temple.)

Santhosh tried to connect with local doctors and hospital administrators. But they were wary of him. A webmaster for a company in Chattanooga at the time, Santhosh didn't have any medical expertise. And he didn't know anything about organizing a medical camp.

It didn't help that Santhosh and Susan had only a vague idea of what exactly they wanted to do. They wanted to help children, and they wanted to bond with their parents.

"We wanted to be hands-on," Susan said.

They could have supported other nonprofits. Plenty of doctors go to developing countries for these kinds of surgeries. But most nonprofits saw their role as giving donations.

Instead, Santhosh quit his job and traveled to India 27 times from 2007 to 2012. Yet he didn't help with any surgeries until he piqued the interest of one particular doctor. The doctor knew a boy who needed surgery. Santhosh and Susan raised money in support.

But when the doctor administered anesthesia, the baby suffered an epileptic fit. The doctor abandoned the surgery.

"It was a complete, utter failure," Santhosh said. "Every time, I came back [to Chattanooga] so disappointed. So upset. I would tell Susan, 'I'm done with this.'"

The doctor in India, however, found two more children who needed surgery. And Santhosh and Susan raised money again. And this time, Santhosh said, the surgeries were successful. The doctor felt energized. He asked the Mathewses to help him organize a medical camp.

They advertised in newspapers, on TV and on the radio. Philip, now at the McCallie School, shared his own story in the ads. The parents of about 10 children showed up. From there, the family continued to push for more operations. They connected with more doctors, who have since formed a team for the nonprofit.

Dr. Sathish Vasishta, who has performed such surgeries since 2009, met Santhosh at one of the camps and was impressed by his energy. They started to work together, with Santhosh doing the outreach and Vasishta the actual medical work.

"I am passionate about my work," said Vasishta, "and I was also looking for somebody [with] whom I can team up."

Susan said their funding has come from donations. The family travels to churches, where Philip shares his story. They also raise money online. A GoFundMe account for the Zimbabwe trip had netted $32,000 in two months, as of Friday evening.

Two years ago, at a Christian conference where they were advertising their nonprofit, Santhosh and Susan met the founder of a worldwide network of churches. She told them they needed to bring their work to Zimbabwe, where the issue also persists.

Bishop Joshua Chiweda, the pastor of a church in Harare, Zimbabwe, said there is a five-year backlog for children in need of cleft lip and palate surgeries. If a child doesn't get the surgery within its first 18 months, Santhosh said, the muscles won't properly form on the roof of his or her mouth. This can cause lifelong speech problems.

The cultural problems also run deep, Chiweda said. The children and their mothers are ostracized, especially in rural communities. Sometimes, Santhosh said, parents sell children to men who force them to beg on the street, believing the deformity on their faces will net more income.

"It's an old belief system," Chiweda said. "People have difficulty in accepting such mishaps."

Dr. Adore Farai Danda, a surgeon in Zimbabwe, said the cleft palate issue will improve through outside groups, such as Love Without Reason. Outside surgeons also need to teach more local doctors how to perform the operations, and outreach groups need to educate people in the area.

Some parents don't know that groups provide help for free, he said. In rural areas where the poverty rate can hit 96 percent, this is a problem.

"Zimbabwe is only but a launchpad," Danda said. "We are going to train and mobilize other African doctors."

When the Mathewses arrive, Philip will come with them. As he has done in the past, he plans to hold a baby before surgery, like his father did for him 17 years ago. Unlike his parents, and because of his parents, he said he doesn't feel scared for the babies.

He wonders instead about how people will feel after the surgery.

"What will people in her village think," he said, "when they see her?"

Contact staff writer Tyler Jett at 423-757-6476 or tjett@timesfreepress.com. Follow him on Twitter @LetsJet.


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