8-year-old Arina was born in a village 5 hours from the nearest city. At birth, the health centre referred her to TF’s local partner. The team coordinates her care to make the most of her travel.
Cleft Care in Bolivia Today
Bolivia is a culturally and environmentally diverse country. Much of the population lives in rural indigenous communities. For children born with cleft, there are multiple barriers to accessing care.
Remote communities mean multi-day travel to the nearest health centres and access to economic resources are challenging. Beliefs that children with cleft bring bad luck or have intellectual differences are common.
For parents who learn that care is possible, word-of-mouth encourages them to seek care through visiting surgical missions and, often, they are turned away. TF’s local partners are working to change this.
Fast Facts
- Population: 12,542,721
- Capital: La Paz
- Poverty Line: 39% of population
- Cleft Incidence: 750+ / year
Key Challenges
Psychosocial Care
The introduction of westernized beauty ideals and misunderstandings of cleft contribute to bullying in schools. For many parents, they have never heard of cleft and are unsure how to navigate the care journey of their child. Feeling excluded from their communities is common. Parent/patient support groups are helping.
Community Engagement
Some remote communities only have internet access in the nearest village. Awareness of cleft and the treatment options are limited. TF’s local partner Ayninakuna partners with health posts and engages in extensive local advocacy to remedy this.
Transportation Assistance
Making the journey to the nearest cleft centre takes several hours or even multiple days. Access to child care, affordability of transportation and taking time away from work affect families’ ability to adhere to treatment plans. Our partner, Ayninakuna, coordinates specialized cleft care services to make the most of centre visits and leverages a network for regular check ups.
The topography and remoteness of communities in Bolivia make access to care challenging. TF’s local partners are finding innovative ways to reach families in need of Comprehensive Cleft Care within these communities.
Program Successes
Participants accessing Comprehensive Cleft Care.
Families living in rural communities receiving specialized CCC
Patients participating in ongoing speech therapy at Ayninakuna
“...The attention to cleft requires a significant economic investment, which would not be possible without international cooperation, family commitment, the work of municipal institutions and caring professionals. Only with specialized and quality care will it be possible to improve living conditions and reduce social exclusion and poverty in our country.”
- Julieta Villca, Executive Director, Fundación Ayninakuna
Stories
When Vasi and Atanas first met 1-year-old Hristo in an orphanage in Bulgaria, they felt an instant connection. Hristo had been given to the orphanage due to his cleft lip and palate. Three other families had considered adopting him, however, perceptions of the cleft journey ultimately changed minds. For Vasi and Atanas, Hristo would complete…
In many communities, unhelpful beliefs about cleft are burdensome for families. For parents, their minds are busied with questions of “why” this has happened to them and what caused this condition to affect their family. With the right support from a dedicated cleft team, families can overcome the noise and fears to help their children…
Brandon is from Lampa in the mountainous region of Northern Chile. No one knew why he struggled to speak clearly, and as soon as he started school, teasing and bullying became his everyday experience. Brandon’s parents were determined to help him thrive. They began reaching out to doctor after doctor. Finally, an answer. Brandon was…
Two-year-old tech-savvy Georgina doesn’t hesitate to call her grandma on WhatsApp when she wants to talk. When the TF team visited her, she was keen to show off her technology-inspired toys. And her favourite food to eat? French fries, even if her parents wish it were broccoli! Reflecting on their journey with Georgina’s cleft so…
In our impact report, we shared that, thanks to our monthly Bright Start donors, we were able to exceptionally arrange surgery for 11 children in the capital city, Yangon. Among those children, a photo of Yoon* and her father, Phyo was featured. Early in 2020, Phyo and his wife Aung learned they would be expecting…
Dan, a bicycle mechanic, and Hellen, a stay-at-home mother, reside on the shores of the swampy Lake Kyoga, along with their two children – Janet and Innocent. In mid-2021, they expanded their family and welcomed a third child, who they would name Esther. It wasn’t until the delivery day that the local health centre discovered…
Our Partners in Cleft Care
TF has been supporting partners in Bolivia since 2024.
Our Partnerships in Bolivia
- Fundación para la Salud Ayninakuna, Cochabamba
- Fundación Jiwaqui, El Alto