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Transforming Faces Blog
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Rahel Tefera is a 10 year old girl from Arbaminch, 500km south of Addis Ababa, Ethiopia. She was born with a cleft palate and has one younger sister who also was born with unilateral cleft lip and palate.
In February 2012, she had her palate repaired at Yekatit 12 Hospital and received speech therapy following her surgery. Her mother did not think Rahel could cope with school because her speech was not easily understood.
However, her mother was counseled about the importance of schooling. Rahel was then enrolled in school while they awaited surgery. She was in first grade when she came for surgery. Rahel reported that the students at school tease her about her speech. It was very beneficial for her that she received counseling while having speech therapy.
Transforming Faces believes that no child should be left without the treatment and support of skilled and caring cleft teams, and we work diligently to make that happen.
In 2012, 185 patients visited the speech therapy unit at Yekatit 12 Hospital in Addis Ababa and were provided with an assessment. From these patients, 38 received ongoing speech therapy training over the course of 517 sessions.
Mesay Gebrehanna returned to Ethiopia after obtaining her Master’s degree in Germany. She is now collaborating with Addis Ababa University to develop a speech diploma program because there are very few qualified speech therapy professionals in Ethiopia.
In Ethiopia, some communities hold traditional beliefs that birth anomalies, such as cleft lip and palate, are the result of a curse. Awareness is often lacking about the causes of cleft and feeding techniques. Hirut Mengistu, an Assistant Speech therapist at our project in Ethiopia, is in charge of intake at Yekatit 12 Hospital. Hirut gives feeding advice and counselling when mothers first visit. After sufficient weight gain, babies are then referred to the surgical team.
In 2012, outreach trips and increased awareness were two priorities for the team in Accra. Transforming Faces travelled with a small team of two nurses, a speech therapist, and a resident surgeon from Korle-Bu to Cape Coast on an outreach trip. We visited the Cape Coast region to treat identify new patients, provide assessments and speech therapy sessions. They hope to focus more on public education in order to dispel myths and help more children.
In Ghana, two surgeon-nurse pairs were trained on pre-operative evaluation, operative techniques for primary and secondary cleft repair and post-operative management of cleft patients. This training was team-based and included surgeons and nurses attending the same lectures, operating together, and participating in post-operative management.
Five nurse anesthetists from Nigeria received training in Ghana to provide safe anesthesia for children undergoing cleft repair.
Also, four assistant speech therapists were trained in Ethiopia, including two participants from Nigeria and Ghana. These assistants will be able to provide basic speech therapy assessment and treatment where there is a shortage of speech therapists.
Want more information? Check out our partnership page!
It starts at birth – Counselling, Nutritional Guidance & Referrals
When a baby is born with cleft lip or palate, it’s vital that the attending medical team offers parents immediate support and information on care options.
Babies with a cleft can be breastfed, so providing new mothers with guidance in this area is particular important to the baby’s health and well-being.
Social workers help new parents address any challenging circumstances or emotions they may be experiencing so they can move confidently forward with treatment.For older children who have gone without cleft treatment for years, counselling helps overcome any negative experiences and helps them adjust to transformation.
Ongoing co-operation between the surgeon and other medical specialists ensures the best possible results for lip surgery at 3 to 6 months and palate surgery at 9 to 12 months.
In some cases, lip, nose and palate revisions are done, as necessary, when the child is 3 to 18 years of age. In some cases, bone grafts and jaw surgery are also needed.
There is an overwhelming belief that a child’s cleft condition is ‘fixed’ with a single surgery, but follow-up and rehabilitation are absolutely vital to address hearing, dental and speech issues. These issues can lead to issues with communication, employment and normal social interaction if left untreated.
To support families affected by cleft lip and palate, we employ community-based workers, provide in-home treatment, pay travel costs for appointments and fund parent support groups.
Speech therapists are highly trained professionals who identify and help children solve problems that keep them from speaking clearly and competently.
Speech therapy is integral to the rehabilitation process and prepares children for a more confident childhood and a brighter future.
Children with clefts can be at higher risk for hearing loss, so early diagnosis and ongoing monitoring by an audiologist is important to a child’s healthy development.
Ear Nose and Throat (ENT) specialists play a vital role in treating ear infections and inserting grommets.
A healthy smile
Good oral hygiene is critical, as is the work of dentists and orthodontists in correcting the bite for healthy chewing, speaking and breathing.
Continued dental assessments and oral health education is vital to ensure that children maintain healthy teeth and are able to smile confidently.
China Cleft was formed in 2012. It will act as a national Chinese cleft society, where hospitals involved with cleft care can set standards of care and a common platform, improve awareness about cleft with the policymakers and the public, and improve access. Jiangsu Stomatological Hospital in Nanjing will continue to be an important participant in China Cleft.
The partnership in India has grown as more districts are seeking community-based rehabilitation (CBR). In 2012, our project began in Cuddalore district, which has a population of 2 million and has relatively high rates of poverty and unemployment. The district was heavily damaged in the 2004 tsunami. In the future, the CBR project will also expand to the Villupuram district.
In 2012, SRU applied for a grant from Mahindra, an Indian multinational automaker. The grant program, called “Spark the Rise,” is a competition where ideas which will “help India to rise” were submitted. Over 1,000 project ideas were received over a period of 6 months.
Implementation of E-Technology in Community-Based Projects (formerly Project E-MPOWER) is a mobile app that will be piloted in our community projects for newborn hearing screening in the Kanchipuram and Thiruvanamalli regions. In the first round of the competition, Implementation of E-Technology in Community-Based Projects mobilized the SRU student population and earned almost 8,000 votes on Facebook. This was enough to advance them to the jury round, where the made a detailed presentation to a panel of judges, and they were awarded a grant totalling CAD $7,800. TF assisted our partners in setting up the pilot project, which is currently underway.
Thailand & Laos
In 2012, we formally launched Speech and Dental Camps in Thailand-Laos to deal with the lack of speech therapy services. This is an innovative pilot project, which is partially co-financed with Smile Train.
We have also partnered with the Tawanchai Cleft Center to develop a birth registry to better track cleft patients and co-ordinate care.
Want more information? Check out our partnership page!