Cleft Transformed
Gonzalo was born with cleft lip and palate in the expansive Andes highlands of Bolivia. For many families in the country, fly-in-fly-out missions are their child’s only hope for surgery.
All children with cleft deserve ongoing full circle care from a local team that will help them live a full and healthy life. Help us maintain the momentum.
Cleft Care: Every Step of the Way
When local teams provide Circle of Care elements such as nutrition, speech therapy, orthodontics and psychosocial care, in addition to safe surgeries, a child’s outcomes improve. A comprehensive approach to cleft care helps children achieve full rehabilitation and community inclusion.
Our partners ensure that families are offered support every step of the way, through personalized treatment plans and a trusted local team.
Tap or click on the hotspots to learn more!
Orthodontics
Orthodontic treatment can be functionally required by children born with cleft. In adolescence, braces, or even surgical treatment may help a child with cleft experience full rehabilitation.
Family Support
The pressures of food insecurity, community inclusion and mental wellbeing - navigating feelings of fear, guilt and isolation, are all too real for many families. Caregivers affected by cleft may require extra assistance in meeting their child’s unique needs. Access to psychosocial support and parent support groups are helpful assets.
Transportation Assistance
For many families, travel is a major barrier to care. Costs are high, distances are long and the lost wages while in transit to appointments can be prohibitive. Bringing care closer to home and ensuring that caregivers have access to adequate transportation and accommodation support are proven CCC strategies.
Psychosocial Support
Bullying and social exclusion can be an ongoing challenge for children born with cleft, even after a successful surgery. Psychosocial professionals can help children address teasing and bullying by building their confidence in responding to questions about cleft.
Psychosocial care can also alleviate a family’s fears, dispel myths and deepen their understanding of the cleft treatment journey.
Newborn Nutrition
Babies born with cleft are especially vulnerable to malnutrition. The gap makes it harder to breastfeed and a cleft palate can lead to milk being aspirated. In resources-constrained communities, alternatives such as formula and cleft-specific bottles are beyond the financial reach of many families.
Infants must achieve a healthy body weight for a safe cleft surgery, so feeding challenges delays their treatment. Persistent malnutrition is a danger to any child.
YOU
You are an integral part of Transforming Faces’ Circle of Care! TF relies on the generosity of its supporters to provide Comprehensive Cleft Care to children and families who need it most.
In under-resourced communities, access to health care is limited and access to Comprehensive Cleft Care can be non-existent. Your donations help us change that, bringing care closer to home.
Surgery
All children born with cleft lip and palate will require surgical care. Safe, timely and effective surgery is a critical foundation to a child’s full rehabilitation.
While protocols vary globally, a cleft lip surgery typically takes place at 3-6 months of age and a cleft palate surgery is planned between 6-12 months. Additional surgeries may also be required to improve a child’s facial function, physical appearance, speech and hearing.
Speech Therapy
Even with surgical treatment, children often face difficulties in speech and can struggle to be understood. They are also prone to air escaping through the nose during speech. Speech therapy at the time of a child’s first words and routinely throughout their childhood can dramatically improve their lives.
Community Engagement
Many parents have never met a child with cleft until the moment their child is born. To access Comprehensive Cleft Care, communities must be aware of cleft as a condition and that treatment is possible and available. For full inclusion, misconceptions and community stigma need to be overcome.
Hearing
Children born with cleft are susceptible to middle ear issues and cleft-connected hearing loss. In the absence of palate muscles, ear infections, temporary loss of hearing and delayed speech and language development can result. Ear, Nose and Throat specialists can play an important role in rehabilitation.
Dental Care
Children born with cleft are at greater risk of cavities and periodontal disease due to misaligned teeth and teeth that do not erupt. Regular dental checks are required and parents and children benefit from effective training on maintaining good oral health.
Tap or click on the hotspots to learn more!
Gonzalo's Journey
Gonzalo was born with cleft lip and palate in the expansive Andean highlands of Bolivia. He is on a journey to access ongoing, comprehensive care.
At high altitudes, rural Bolivian families grow what they can. All other necessities, from goods to healthcare, require arduous travel.
Far away, annual fly-in-fly-out surgical missions are generally a family's only hope for receiving cleft care.
Yet, effective treatment often requires ongoing support throughout a child’s life.
TF’s local partner, Ayninakuna Cleft Centre, is helping families complete their journey toward full rehabilitation. Please help us maintain the momentum.
Gonzalo’s Community
17.90°S, 66.35°W
*Approximate coordinates
Roads do not appear on the map. Natural landmarks serve as the only point of reference.
13,120 ft
The altitude the family resides at, making growing conditions limiting.
Subsistence Farming
Families survive on potato, oat, and wheat.
Quechua
Primary language spoken in the region.
3G Network
The only available connection found at the top of the mountain.
Luciano’s call got through.
Thankfully, the nurse at the health post knew about cleft and that treatment was possible.
There were two options: wait for a future surgical mission, a multi-day trek away; or contact Ayninakuna, our local partner, offering Comprehensive Cleft Care in the city of Cochabamba.
This marked the beginning of Gonzalo's cleft care journey.
The Ayninakuna team began coordination by telephone, coaching the family on proper feeding techniques and nutrition.
It wasn’t long before the health post confirmed that Gonzalo was in sufficiently good health to embark on the 7-hour bus trip to the centre.
So far, Gonzalo has accessed surgeries for his cleft lip and palate and Luciano and Filomena have been equipped to help their son thrive between visits. They are well-supported by the cleft care team for the road ahead.
These days, his family visits every few months for dental, health, and psychosocial care.
In Bolivia, the Comprehensive Cleft Care journey requires commitment and courage.
The cleft care team knows that travel is long and complicated for rural families. In response, they coordinate care across cleft disciplines to make the most of each family’s visit.
For Gonzalo, speech therapy, psychosocial care and orthodontics are on the horizon. His future is bright.
All children with cleft deserve care from a local team to help them live a full and healthy life.
Please help us maintain this momentum.
You can help complete their journey.
