Changing a child's life: Treating cleft in developing countries
"Give every child the chance to smile"
This statement, and others, dot the website of Smile Train -- a charitable organization treating cleft lip and cleft palate in the developing world. These conditions can cause complications in speech, eating and even breathing.
To get a better idea of the causes, complications and treatment of cleft lip and palate, we’re joined by Dr. Christopher Viozzi on “Take Care.” Viozzi is an oral surgeon with The Mayo Clinic in Rochester, Minnesota. He specializes in pediatric and adolescent medicine, among other things. Viozzi has been in practice over 20 years and has helped not only children, but also fellow passengers when he’s over 30,000 feet in the air.
Cleft lip is typically a notch in the lip. In a cleft palate, that notch extends further back into the palate of the mouth.
“It’s more common, really, that they’re together than isolated,” Viozzi says.
There are some known risk factors for cleft lip and palate, including: exposure to environmental pathogens (cigarette smoke, alcohol, etc.) and some medications (like those used for treatment of seizure).
In most cases, Viozzi says it’s not typically known what causes these problems.
“Babies who are born as having just cleft lip or cleft palate, their biggest initial problem is feeding,” Viozzi says. “Because there’s a communication with the nose, babies cannot form a good suction. So whether they’re breast fed or bottle fed, there are significant issues with suction.”
Slightly older children can have problems with speech, as well.
All of these problems impact normal growth and development of the middle part of the face. That’s where treatment comes in.
Many surgeries, over time
Patients born with these complications will have, on average, 10 to 11 surgeries by the time they’re young adults.
“It’s a sequence of things that begins early on with repair of the lip and moves forward with repair eventually of the palate,” Viozzi says. “Eventually also bone grafting of the upper palatal bone -- the hard palate -- and sometimes there’s a need to actually move the upper and lower jaws into different locations.”
Surgeries on the nose are also usually a part of the treatment process.
Viozzi explains that some treatment centers provide a comprehensive team of surgeons, doctors and therapists that treat the child over the course of their needed surgeries. Multiple surgical teams will be involved, at times, to minimize the patient’s exposure to anesthesia.
It’s a comprehensive approach for children born with a cleft lip or cleft palate. The same goes for the mission of Smile Train. They’re trying to make lasting change through awareness and support of not only the children, but their families and even the doctors treating them.
“Our philosophy was built on creating a sustainable model to treat cleft. So our approach was a teach a man to fish approach … It’s training, training more surgeons, providing them the funding and the resources they need so they can treat cleft in their own communities,” says Susannah Schaefer, CEO of Smile Train.
The organization is focused on empowering every member of the treatment team and on building sustainability and capacity.
"Our philosophy was built on creating a sustainable model to treat cleft. So our approach was a teach a man to fish approach..."
There’s a lot of stigma surrounding cleft lip and palate in developing countries. That’s part of the reason why, as Susannah says, awareness is key.
“It’s not just that there is Smile Train that can help, but even having people understand if they see a child with an untreated cleft, what it is and that there is Smile Train that can help them.”
The story of the organization’s one-millionth patient tells a lot about how difficult facilitating these surgeries can be, and how important they are to the patient and their family.
Osawa’s mother heard about Smile Train on the radio.
“She took Osawa with her and made a 700-mile journey from her small village in Tanzania to Dar Salam to our partner hospital,” Susannah said.
Just to put things in context, that trip is similar to traveling from New York City to Indianapolis.
After an examination, Osawa was cleared for surgery.
“It was an amazing opportunity to see, six months after the life-changing surgery, a little boy smiling with a real happy smile, flourishing with his friends. I met his teacher. It just really brought full circle, to me, what we do.”
Osawa and his family were still thriving a year after his surgery, in case you want to hear more about their story.