The Coaquira Arias family lives in a rural area in central Bolivia. About half of the patients that Canadian charity Transforming Cleft partners to support in Bolivia come from rural areas where their access to consistent electricity, internet and running water is limited.SAHIL ALI
Transforming Cleft partners with local organizations to provide comprehensive cleft care
When Gonzalo was born at home in rural Bolivia, his parents had never seen a child with cleft lip and palate – an opening in the lip and roof of the mouth. They were initially shocked and fearful, but fortunately the local health post, equipped for vaccinations and basic health monitoring, had been educated about the anomaly through the efforts of Canadian-based charity, Transforming Cleft (TC) and its local partner Fundación Ayninakuna. The family was quickly referred to the cleft care centre in Cochabamba, and social work began over the phone before the family visited the city for the first time.
The early referral and treatment at a cleft centre with the expertise to provide Gonzalo ongoing care is an illustrative example of the work done by Transforming Cleft in partnership with trusted local organizations in low- and middle-income countries to provide Comprehensive Cleft Care.
Raising awareness of cleft is a critical part of TC’s work. Patients who receive help when they’re younger can achieve the best results and benefit from rehabilitation, says Yalexis Barr, the charity’s Latin America program manager.
“But there are many challenges even before the surgery,” she says, noting 79 per cent of the families helped by Ayninakuna are low-income households.
“For an infant to make it to the first surgery they have to reach a certain weight to be able to manage the anesthesia. Families may struggle to get their baby to feed, and nutritional counselling is necessary for them to achieve the goal weight,” she adds.
Typically, if a child has a cleft, it can be very challenging for them to breastfeed.
“Unfortunately, malnutrition is a factor. If a family is experiencing poverty, how can they afford formula when it’s needed, or a special bottle? Our local partners assess these needs and provide support,” says Kristian Wykes, senior manager of communications and engagement.
Ayninakuna’s programs include connecting parents who have a child with cleft with parents who have older children who have benefitted from comprehensive cleft care – a multidisciplinary approach to treating cleft lip and palate– so they can see an example of somebody who has achieved their milestones, thrives in school and participates in their community.
Ms. Barr says one of the common misconceptions about cleft is that surgery is the single solution while the reality is that the child will often need access to specialties like pediatrics, nutrition, psychology, social work, speech therapy and dental care.
TC operates with a ‘partner locally and innovate globally’ philosophy.
“We help build local systems so that local professionals can provide patients with the full range of care services they need. For us, global innovation is creating opportunities to collaborate on research or learning across borders and sharing expertise,” says Ms. Barr.
TC also identifies gaps in local health-care systems to provide all the interventions necessary for a child to achieve full rehabilitation.
For example, in Ethiopia there were few speech therapists to support patients with a cleft. TC collaborated with the University of Toronto and Addis Ababa University to establish the country’s first speech-language pathology bachelor’s and later master’s program.
These collaborations provide opportunities for Ethiopians to study locally and keep knowledge in the country.
Gonzalo and his parents at a checkup appointment in Cochabamba. The family descends “the little mountain” where they live to arrive at the bus stop, which begins their 350-km journey to Gonzalo’s clinic day.SAHIL ALI
New journeys
This GivingTuesday, TC is launching Journeymakers, a new monthly giving program.
“When you give monthly you are sustaining the entire cleft care journey that children deserve to access,” says Mr. Wykes, noting that any journey has its challenges.
“Cleft journeys can be challenging for families. Sometimes it feels like one step forward, two steps backwards, but eventually, with the right supports, they’ll reach the destination,” he says.
“Our monthly donors can support access to the ongoing care that these patients need to achieve full rehabilitation, inclusive of surgery and everything necessary beyond that to reach the end of the journey,” he says.
Thanks to a private foundation, new members of Journeymakers will have their monthly gifts matched for the whole year (collectively up to $75,000). One hundred per cent of donor gifts go towards cleft care.
Learn more: transformingcleft.org/journeymakers
Advertising feature produced by Randall Anthony Communications. The Globe’s editorial department was not involved.