8-year-old Arina was born in a village 5 hours from the nearest city. At birth, the health centre referred her to TC’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. TC’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. TC’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. TC’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
Laced and Andry were overjoyed to be expecting another child. Would their daughter, Sarobidy, have a little brother or sister? Yet beneath the excitement, a quiet unease lingered. Joy filled the room when Marcella was born, but it was fleeting. Laced and Andry’s midwife had news. It was the very fear that had weighed on their hearts. Marcella was born with a cleft palate, just…
Story originally featured in Transforming Cleft’s Annual Report released in May 2023. For the last 20 years, Transforming Cleft has partnered locally to deliver Comprehensive Cleft Care (CCC) in Eastern Myanmar, where many families rely on medical care based in Thailand. Throughout 2022 & 2023, the border between Myanmar and Thailand remained closed. The…
Naly was born with a cleft palate. His parents were acquainted with the challenges this poses for feeding and eventually for clear speech – a cousin was also affected by cleft years earlier. Like their relatives, they felt that they had nowhere to turn. When Naly was 18 months old, the family learned that a surgical…
Nurit was relieved when her daughter, 1.5 year old Gebrela, made it successfully through her third surgical treatment at CURE Ethiopia, Transforming Cleft’s local partner. The procedure was shorter and less intimidating than her daughter’s cleft lip and cleft palate surgeries. By nearly eliminating the chance of cleft-connected hearing loss, Nurit knew it was worth…
“It was like a cold bucket of water pouring over me…”. Rubí described the moment she learned her son Brian would be born with a cleft lip and palate. As the news doused her, her thoughts darted. Until then, Rubí and her husband Luis were focused on the jubilation of their first pregnancy. Cleft wasn’t…
Cristian’s first experiences with healthcare caused his family to feel fear and distrust. He was born in Bolivia with a cleft lip and palate. His parents, Teresa and Fabricio, were uncertain about the future. But one thing they did know – they would be along side their son every step of the way. In Bolivia,…
Our Partners in Cleft Care
TC has been supporting partners in Bolivia since 2024.
Our Partnerships in Bolivia
- Fundación para la Salud Ayninakuna, Cochabamba
- Fundación Jiwaqui, El Alto