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Jesica, aged 15, was born with a complete unilateral cleft lip and palate. She had her first lip repair surgery when she was a year old and in the years that followed, she underwent six more surgeries.
She’s been a patient at the Gavina Foundation, TF’s partner in Argentina, for five years and has received speech therapy, dental, and orthodontic support. She’s a determined young woman – the last five years, she has not missed one appointment.
Pictured here: Jesica with Gabriela, Gavina’s Executive Director
Jesica’s parents sell fruits and vegetables in their home of La Reduccion in Lules, Tucuman Province. She lives with an older brother, who is 23, as well as her grandfather. Like many of our patients, her family struggles to afford the basic necessities of life. Her treatments have made it difficult for her mother to afford to put food on the table. Jesica told us that without her parents, she doesn’t believe she would have received treatment for her cleft.
It can be difficult for some families to deal with a child with any special needs, including a cleft, which involves arduous travel, many appointments, and can be physically, emotionally, and economically draining. Most of the families using Gavina’s services are poor; many parents have low levels of education and thus low earning power, and losing time means losing money.
Although her peers used to tease her for her cleft scar and how she talked, she says she now has a lot of friends who support her and she can explain her scar and speech to people when they ask.
Jesica loves to draw and paint and would like to be an artist someday. We asked her what she would wish for if she had three wishes, and she replied, “To be better in every way.” She also said she would like to have a career, to be able to work, but sometimes she feels like she won’t be able to do it.
Still, she says that she would tell other cleft patients starting their treatments, “Keep going. All of us can accomplish things.”
For those like Jesica, comprehensive treatment that goes beyond the initial surgery is needed – often this treatment extends into early adulthood. It can be a complex and tiring process. As our patients grow older, Transforming Faces continues to adapt to meet the needs of our partners.
Surgery is an important part of a child’s treatment, but it’s just the beginning of the journey. Providing multi-disciplinary and long-term cleft care requires a significant amount of collaboration and hard work.
We partner with the Amity Foundation, a Chinese voluntary organization, and the Jiangsu Stomatological Hospital in Nanjing.
Our project promotes the multi-disciplinary approach to care so full rehabilitation is accessible to as many patients as possible.
Our partners worked together over the years to establish a team approach to managing cleft lip and palate, which has not typically been the norm in China. The team provided orthodontics, speech therapy, counselling, and primary/secondary cleft surgeries.
JPSH now has a nurse with speech therapy training who is dedicated to performing speech therapy for 75% of her time. The team has been doing education and outreach to parents and families (e.g. family camps, oral health outreach visits) and educated them on the importance of ongoing care. In mid-August, a family camp was held with the support of TF. The families who participated were excited after learning about treatment options.
After six years, our partnership with Amity and JPSH is scheduled to come to an end in late December. The team has excelled at bringing the idea of team care to China. We hope to continue to share learnings with the team in future.
Check out some photos from our Chinese project:
L to R: A birthday at the family camp; Gao Mei, our project coordinator, interacts with a patient and her mother; The families and team pose at the conclusion of the family camp: Gao Haitao, Before & After treatment at our partner project in China: Shao Yulong, Before & After treatment at our partner project in China
In this issue:
- Meet Jowel
- Salsa for Smiles a Success!
- Save the Date: Our Gala will take place on May 15, 2014!
- Meet our TF Champions
- Our Global Family: Announcements from our partners, a mobile app, and training updates
We partner with top Speech and Orthodontic specialists at Chennai’s Sri Ramachandra University (SRU) to provide care to rural families in the Thiruvannamalai District.
The SRU team travels each month to rural communities to provide the following services:
- Identification of speech and hearing disorders
- Referrals to ENT specialists
- Speech therapy, using trained community-based rehabilitation (CBR) workers
- Dental and orthodontic work
Over the course of 2013, our partners in India have carried out the following activities:
- Six speech camps were conducted in the Thiruvannamalai district and 131 patients attended; 75 patients received follow up appointments.
- In 2012, our project began in Cuddalore district, which has a population of 2 million and has relatively high rates of poverty and unemployment. At the beginning of this year, one camp was conducted in the Cuddalore district and 15 patients attended. They have all received follow up appointments.
- 10 new patients received speech correction services in the Cuddalore district. Each child received about 30-50 minutes sessions of speech correction service.
- CBR workers reached out to children who were receiving speech correction service using a mobile phone – the sessions were monitored and feedback was provided.
- All patients who reported to cleft clinic were referred for regular Audiological screening. Patients who failed in the screening were recommended for ENT consultation.
- As a part of the project activities, a database sheet was designed and used for collecting patient related information. These sheets are used to track the treatment provided/recommended for patients.
- As a part of the project activities, audio visual materials were developed and used for sensitization and training programs for grassroots workers in the districts.
To find out more about our work in India, click here.
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In Ethiopia, as in many developing countries, the social work profession is still in its infancy. As a field of study and practice, it is not generally well understood by the public or by policymakers. However, the team at Yekatit 12 recognized the importance of social work for guiding patients and families through the treatment process and for equipping children with tools to adapt to school and community life.
Hirut Mengistu has worked at Yekatit 12 Hospital since 2007 as the assistance speech therapist. In 2011, she began to train as a social worker. In 2012, she increased her activity and reached 110 patients, up from 40 in 2011. She also created a local set of protocols for working with patients and families affected by cleft lip and palate.
In November 2012, Hirut enrolled in a part-time Master’s degree program in order to upgrade her skills, while continuing to work full-time at the cleft unit. Transforming Faces has agreed to provide a scholarship in support of her studies.
She now divides her time between social work and speech therapy. Hirut has led 4 parent group discussions and has provided counselling to parents. She is in charge of intake at the project and she sees about 3-4 families per week as part of this process.