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Medical brigade from Lexington travels to India to care for 'special children'

Monday, June 23, 2014

Wearing a bright orange shirt that reflects his exuberance, a 6-year-old throws around all the toys he can reach in a cramped, dingy room without air conditioning. He won't respond to his name, Harshit, but he likes all the noises he can make with the cheap plastic surrounding him.

Autism, the doctors and special educators think.

"Reciprocity" is a problem here, says Dr. Dan Larrow, a developmental pediatrician at the University of Kentucky. That means the boy doesn't respond to stimuli such as someone calling his name.

"If this were a kid coming into our Lexington clinic, we'd know we have a challenge," Larrow says.

But this boy in neon orange with the liquid-brown eyes is not in Lexington, he's in the rural Indian village of Mayasandra. And the professionals evaluating him are part of a multidisciplinary team from Lexington that has traveled halfway across the world to deliver medical care and recommendations.

This annual brigade is led by Dr. Thomas Young, a UK professor of pediatrics and chair of UK's Shoulder to Shoulder Global program, which operates a primary care clinic in Ecuador. Young; Dr. Mike Anstead, a UK pediatric pulmonologist; Dr. Harohalli Shashidhar, a former UK physician; Shashidhar's father-in-law, Dr. M.N. Subramanya, a retired surgeon originally from Mayasandra; and the Shoulder to Shoulder Global board all helped fund the clinic's setup in the Indian village.

Since 2009, Young has led several groups from Lexington, consisting of students and professionals, to work at the clinic for a week. After they saw 500 children at their first Mayasandra clinic, Young and his group decided to specify their care based on the community's needs.

"We saw all these kids with disabilities. It was such an obvious need," he said. "I didn't envision all this when I started. You learn and make mistakes, and try to get better next time."

Young has worked with Subramanya in India to perfect a model for how Lexington can bring its talents to children in Mayasandra with special health needs, physical and mental.

"These children are special children," Subramanya said. "Before, all they had was a label. Nobody claimed them. Nobody taught them."

The trip has evolved into an unprecedented multidisciplinary approach that pulls from all corners of the Lexington medical community. This year 14 participated, including special educators, a speech and language therapist, pediatric residents, physical-therapy students and other professionals. All but the speech and language therapist work in the Lexington area.

"It was a great experience to know what each member contributed to the team," said Ann Cooper, a UK physical-therapy student who went on the trip. "You saw what the doctors specifically do, what the special educators specifically do, PT, speech and language. It was interesting to see a team working together that's not spread out in a hospital. They're all in one room."

In that same room are all walks of rural Indian life. There is the 4-year-old girl who hasn't learned to walk, crawl or even roll over. There is a 16-year-old boy with an oversize grin permanently on his face and little to no ability to communicate.

There are those with cerebral palsy, the children diagnosed as mentally retarded, and the sisters who were born deaf.

There are those who live in shacks without running water or electricity, and those who traveled six hours to visit the group from Kentucky.

"Emotionally, it's difficult to see the resources are so much more limited here," said Trevor Tanous, a physical therapist at Cardinal Hill Rehabilitation Hospital traveling to Mayasandra for the first time. "Emotionally, it's also exciting to see that we are able to identify and help some kids get better care."

Although the group from Kentucky is in Mayasandra just once a year, the weeklong trip has an air of permanence in a country searching for long-term solutions rather than financial band-aids.

Young learned from his Shoulder to Shoulder trips to Ecuador that long-term progress was key.

"You have to have the sustainability piece," he said. "I didn't realize that when I first started. We were just going to take residents down there and save all these kids. Then you realize disappearing after a week does no good."

The clinic in India continues even without its American supporters on hand. It is staffed year-round, and a van, funded by Shoulder to Shoulder Global, collects children from 16 villages and brings them in.

The multidisciplinary approach is new to Young's program, but it's a model more helpful for the Maya sandra children with disabilities.

"All those professionals look at the child through a different lens, so we all bring our different experiences and knowledge, and that's the best way to provide treatment," said Katherine McCormick, an interdisciplinary early childhood education professor at UK who went on this year's Mayasandra trip. "The approach is more immediate. I can ask the physical therapist, 'How do you think this movement impacts the child's ability to learn?' and she can tell me immediately."

Not only does the multidisciplinary approach assist in treating and diagnosing children with disabilities, but there is also an educational component for the participants. Younger professionals get international real-world experience.

Several Indian medical students got that experience, too, working alongside the group from Lexington and acting as translators.

"As medical students, we rarely get to step out of our domain and interact with fields related to medicine, fields we'd likely work with in the future, too," said Layma Ibrahim, a student at India's Mysore Medical College and Research Institute.

"The camp in Mayasandra not only demonstrated how effective such an interdisciplinary approach could be, but also gave us the opportunity to be a part of it."

All those puzzle pieces have come together to create an institution Young and his colleagues hope will last for years in the remote Indian village. Although money is donated to the cause from those in Kentucky, they are not feeding money into a broken system. Rather, they're creating a system that's self-sustaining.

A theme of this year's Mayasandra trip, for example, was evaluating opportunities for overseas staff training. Telemedicine equipment has been donated to the clinic by Polycom in India, and Young hopes to use the technology for video conferencing, medical consultations and more between Kentucky and India.

Expanding telemedicine opportunities, increasing the variety of professionals traveling to Mayasandra and continuing to build the clinic's infrastructure are all goals for the interdisciplinary group. Subramanya has offered to donate land for a new clinic, if about $75,000 can be raised for building costs. Certified teachers need to be hired within the clinic, and that comes with a price tag, too.

Plans, and passion for pursuing them, abound with the project. Subramanya and Young have talked about developing vocational workshops to train the clinic's children in skills such as baking or crafting to help them in daily life. For that to be achieved, the multidisciplinary approach will continue.

"Before, these kids just stayed in the house and were very isolated," Young said. "That's a big deal to a child's life. I wish there was a way to quantify that, but I think that's what we're most proud of."

Ashley Scoby is a senior journalism and international studies major at the University of Kentucky. She was invited to join the UK medical brigade in India to chronicle its experiences.