One smile at a time
Mizzou doctoral student helps children cope with medical experiences
School-age children in Peru await surgery. Toni Crowell engages them in therapeutic play that helps decrease their anxiety and normalize the experience for them. (Photo courtesy of Toni Crowell)
Sut means "split lip" in Vietnamese. For nine years, it's the name a young boy was known by in his village. In the span of an hour, that changed. After a short operation repairing his cleft lip, Sut's mother and his community began using his birth name, Thanh, which means "blue sky."
Toni Crowell, a doctoral student and Blumenthal Fellow for Child Life in the Department of Human Development and Family Studies, knows Thanh's story firsthand. She has been on eight missions with Operation Smile, a nonprofit organization that provides surgery and care to children with cleft lips and palates.
Crowell started volunteering with Operation Smile in 2000. She returned from her latest mission to Mexico in November. She also has been on missions to Nicaragua, Kenya, Vietnam, Ecuador, Belarus and Peru. Crowell, a certified child life specialist, provides support to children and their families as they navigate the medical experience.
Cleft lip and palate
Early in pregnancy, if a developing fetus doesn't have enough mouth tissue, an opening in the skin of the upper lip — a cleft lip — or an opening between the roof of the mouth and the nasal cavity — a cleft palate — forms. Some children have both, but others develop only one. Doctors are unsure of the cause.
In the U.S., infants with cleft lips and palates get treatment early. In developing countries, such as those served by Operation Smile, families often don't have access to such medical care.
"It's a quality of life thing. You can live with it, but you're isolated," Crowell says. "Babies often have feeding issues because they can't suck or, with a hole in the roof of their mouth, food just comes out through the nose."
On a mission
Each mission involves about 50 volunteers including doctors, nurses, psychologists, dentists and others. A mission consists of two days of screening, one day of operating room setup, a day of team bonding exercises and five days of surgery, sometimes on up to 30 children per day.
In the two days of screening, Crowell gets to know the children and their families. She uses therapeutic play, such as demonstrating procedures on a doll, to help prepare the children.
“Part of our preparation is sensory — preparing them for what they're going to hear, what they're going to smell, what they're going to see and feel. I show them photos of the operating room and let them play with the anesthesia mask. We do a lot of bubble blowing through it so they get used to that," Crowell says. In Ecuador, children called her "Senorita Burbujas (Bubbles)." After surgery, Crowell helps distract children from their pain.
Crowell speaks enough Spanish “to get by” but says, luckily, play is universal with kids. She relies on translators when supporting parents who have to essentially hand their child over to strangers for the surgery.
Crowell will travel to Panama in March to train nurses, psychologists and other professionals to support children going through medical procedures and their families. Crowell plans to finish her doctorate, seek a position as a professor and continue to volunteer with Operation Smile.
"It exhausts you physically and emotionally, but it also refreshes and inspires you," Crowell says. "All I need is bubbles, a toy doctor's kit, and crayons, and I'm OK."