Helping children lift up their voices
Pulse editor
Sunday, August 24, 2008
Two images drive Oruba Odeh’s passion for starting a speech clinic in Jordan, her native country. The first was in 2006 when she saw a young child at a clinic waiting to be screened for surgery for his cleft lip.
“When I saw him, he hid his face in his mother’s lap because he thought he had an ugly face. That picture stayed with me and is a reason why I volunteer to work with Operation Smile,” said Odeh, a speech-language pathologist.
BARRY WILLIAMS / Special
Oruba Odeh demonstrates a speech-therapy exercise for Kevin Richardson and his daughter, Lauren, 18 months. Lauren, who has had three surgeries to correct a cleft palate, is undergoing speech therapy at the Children’s Healthcare of Atlanta Center for Craniofacial Disorders.
BARRY WILLIAMS / Special
‘We will be able to do many things now in Jordan. I know we can help people.’ - Oruba Odeh, Speech-language pathologist.
BARRY WILLIAMS / Special
Oruba Odeh examines a patient’s X-ray with Dr. John Riski, medical director of the speech lab at the Children’s Healthcare of Atlanta Center for Craniofacial Disorders at Scottish Rite.
VASNA WILSON / Operation Smile
Thais Kelly de Araujo of Brazil was born with a cleft lip. Operation Smile provided her with free reconstructive surgery and now she has a beautiful smile.
Operation Smile is a medical charity that sends doctors and health care professionals on mission trips across the world to repair facial deformities in children.
The second image is from 2007.
“I saw the same child and he was still hiding his face. This time, he had had surgery, but his friends made fun of his speech,” Odeh said. “It’s not just the surgery that makes the smile. It’s also learning how to speak properly.”
John Riski, Ph.D., is the medical director of the speech lab at the Children’s Healthcare of Atlanta Center for Craniofacial Disorders. His life’s work is to help children with craniofacial disorders get the speech therapy they need to speak normally.
“Repairing a cleft lip allows a child to be less marked in society, but if the cleft palate is left open, he wouldn’t be able to talk well.”
According to Riski, about one in every 1,000 babies worldwide are affected by cleft lip and palate.
Children’s Healthcare of Atlanta’s center uses a team approach to treat craniofacial malformations. Speech-language therapists, dentists and other therapists work with surgeons on a complete treatment plan.
Odeh came to Atlanta to learn this approach.
“We don’t have speech pathologists in the hospitals in Jordan,” Odeh said. “Kids who have surgeries have to be referred to a private clinic.”
Jordan is known for having a sophisticated medical system that attracts patients from all over the Middle East. Not everyone who comes for treatment can afford to stay in the country to pursue private follow-up treatment after surgery.
Hoping to make it easier for craniofacial patients, Operation Smile asked Odeh if she’d be willing to set up and run a speech lab in Jordan, where she and other therapists would work with doctors and dentists as a team.
“I said ‘OK,’ but told them I had no idea how to run a clinic and work with a team,” Odeh said.
She asked for training and sought out Riski because of his reputation and work with Operation Smile. The organization funded her training at Scottish Rite.
Operation Smile regularly brings doctors from other countries to learn American surgical techniques.
“The next wave of training is to train surgeons, orthodontists and speech pathologists to do the rehabilitation work after surgery,” Riski said.
Riski teaches speech pathology at the University of Georgia and Georgia State University. Because of Riski’s reputation, graduate students from all over the country come to intern at Children’s.
In May, Riski hosted a dozen speech-language pathologists from nine countries for a two-day seminar about how a craniofacial team works. Afterward, Odeh stayed in Atlanta until mid-July to learn more, working alongside the practitioners at Children’s to observe day-to-day operations with patients in all stages of treatment. She has since returned to Jordan.
Making a difference
Children’s Healthcare of Atlanta’s Center for Craniofacial Disorders treats about 150 newborns a year and handles a caseload of 9,000 to 10,000 children from the Southeast. The center offers interdisciplinary care for children from birth to age 21, including oral and maxillofacial surgery, pediatric dentistry, orthodontic services, plastic surgery, speech pathology, neuropsychological screenings and evaluations, and feeding and lactation services.
Brenda Kiser, RN, a pediatric nurse for 25 years, coordinates the care.
“I’ve been working here for eight years, and it’s such rewarding work,” Kiser said. “The parents we see are anxious and our role as nurses is to give them as much education as we can and as much help as they need. The best news is that this is a birth defect that can be corrected.”
Kiser takes pleasure in seeing patients improve.
“I love watching the kids come in and make progress,” she said. “We have team members who can help families all along the way in one place and see some of the best outcomes. Imagine if families had to find the specialists and make all the appointments themselves.”
Team effort
The first priority for patients is feeding. Infants with cleft lips who can’t suck won’t thrive.
“Parents meet with our feeding team, which includes an occupational therapist and nutritionist,” Kiser said. “The therapist watches the baby feed and makes adjustments with special nipples or techniques.”
A surgeon can repair a cleft lip when a baby is three months old and can fix a cleft palate at six to nine months, but only if the infant has gained enough weight and is healthy. Proper nutrition is a must.
There’s a geneticist on staff to answer questions about what causes the disorder.
“It’s comforting for parents to get answers and counseling, especially if they are planning future pregnancies,” Kiser said.
A social worker is available to discuss social and financial needs and to suggest resources.
The speech language pathologists perform endoscopy and other tests to see whether the velopharyngeal valve is damaged. The valve must close correctly in order for someone to make the 43 oral sounds that come from the mouth.
Three sounds — ‘m,’ ‘n’ and ‘ng’ — are nasal. Because children with cleft and palate lip often speak nasally, it’s important for them to learn how to form oral sounds correctly.
“Scoping allows us to look at the throat from different perspectives and to see what’s going on with the soft palate,” Riski said.
As toddlers start to babble, Riski listens to their speech.
“You have to use your ears to recognize problems where the cleft is not obvious,” he said.
He may suggest further surgery or therapy to teach a child to produce oral sounds instead of nasal ones.
Fixing problems and helping kids, “always feels good,” said Riski, which is why he enjoys training others in the field.
Odeh has learned how to perform endoscopies on patients and how to read the images from a computer screen. To get the Jordanian clinic off to a good start with the necessary equipment, Riski helped Odeh write a grant proposal to Operation Smile.
She returned to her country equipped with flyers, brochures and guides that she translated into Arabic to help parents care for their children. Besides learning advanced techniques in her specialty, Odeh acquired office skills such as setting up a patient database on the computer and, more importantly, working with other professionals on a team.
“I’ve never seen such a dedicated, professional team as here,” she said. “They all work in harmony with each other and with their patients and families. Everyone is satisfied.
“In Jordan, surgeons aren’t used to listening to us (speech-language pathologists), but I intend to speak up and tell them I have experience and a master’s degree. I am trained to help make decisions on whether a child needs surgery or speech therapy.”
Odeh believes that she has a responsibility to use her skills and make the team model work in Jordan. Riski and his team have pledged to support her from a distance by e-mail.
“I am a lot nervous, but also excited,” she said. “I have been so lucky to have this experience to train with this team of colleagues, and look forward to training others. We will be able to do many things now in Jordan. I know we can help people.”
Riski doesn’t doubt it.
“Her whole face lights up with passion when she starts talking about the new program,” he said.