March 30, 2018

UAMS Otolaryngologist, Nurse Provide Humanitarian Cleft Work in Ecuador

Lucia Wesley with a child patient

Lucia Wesley, R. N., cleft team coordinator

Two UAMS/Arkansas Children’s Hospital (ACH) cleft palate team members are playing an active role in humanitarian work in Guayaquil, Ecuador, with the nonprofit organization Global Smile Foundation (GSF).

Adam Johnson, M.D., Ph.D.– otolaryngologist, cleft surgeon and ACH Velopharyngeal Insufficiency (VPI) Clinic director – and Lucia Wesley, R.N., otolaryngology specialty nurse and cleft team coordinator, have participated in three missions over three years and have made ongoing commitments to the organization.

Adam Johnson, M.D., Ph.D., with patient

Adam Johnson, M.D., Ph.D., otolaryngologist, cleft surgeon and ACH VPI Clinic director

Each mission lasts about a week. From the moment the team arrives, there is work to do. They spend one day unpacking, one day screening and five days performing surgeries.

Johnson said the work goes on “until it’s done,” which can often mean long days. He is typically one of a group of six surgeons per trip.

“But in reality, our part is quite simple,” Johnson said. “It’s these families that have the difficulty. We will often meet a family that has driven 16 hours across the country on a motorcycle with three kids on their back just to get to us. It’s amazing to see the sacrifices some of these families will make to give their child their smile back, but it’s important. It can often mean having a future: the potential to get married or get a job. So it’s really the dedication of the families that is most inspiring.”

During the most recent mission in March, the team screened 365 patients and performed 131 surgeries.

Wesley acts as the peri-operative nurse, providing extensive pre-op and post-op cleft care and education to families.

“Cleft care doesn’t stop after their cleft lip and palate surgeries are completed, it’s not a one-and-done type thing,” Wesley said. “We teach families how to continue to give their children the cleft care they need by providing those services to them free of charge. These services include dental, speech therapy and psychology.”

Wesley said her favorite part is “loving on babies and their moms.”

“I love working with cleft kids of all ages so it makes my heart fill with joy to be able to use my skillset in cleft care to help those less fortunate,” Wesley said. “I am honored and blessed to do it and would not trade it for the world. The idea that we could make that kind of difference anywhere in the world, a place where there are fewer resources – that is really powerful.”

Their work doesn’t stop when they are back in the states, as Johnson and Wesley are highly involved with GSF throughout the entire year.

Johnson has been named to the GSF Surgical Board of Directors. Johnson is establishing protocols, conducting research and reaching out to local ENT’s to establish partnerships. One of his most recent projects is working with speech pathologists and a couple of other surgeons to start a speech program focused primary on VPI, which may eventually lead to an additional speech-focused mission trip.

Wesley remains in constant communication with the GSF staff. She is helping them build a self-sustaining multidisciplinary team in Ecuador to mirror the nationally accredited team at ACH. She most recently took part as a speaker at a comprehensive cleft care workshop hosted by GSF in Beirut, Lebanon, to empower health care professionals like surgeons, nurses and speech pathologists to create sustainable platforms for cleft care in their countries.

“This work has made me appreciate what an amazing team we have here at Arkansas Children’s,” Wesley said. “Our team can serve as a model for cleft surgeons nationally and internationally who want to build a multidisciplinary team. After three years, I’ve developed a lot of gratitude for what we have, and I’m so thankful to be a part of sharing it with others around the globe.”

Johnson said that when he went on his first trip three years ago, he was unsure if it would be a one-time thing.

“You can change someone’s life with a simple surgery,” Johnson said. “I love to see the family smile or cry tears of joy. I love that feeling. The trip is something I look forward to every year, and I feel like I absolutely have to go back. It’s a part of me now and is the reason that I have trained for so long.”

GSF’s mission is to bring first-class surgical repair to patients throughout the developing world who suffer from congenital facial deformities. GSF works with seven partner sites in Latin America, Africa, the Middle East and the Indian subcontinent.