Baby John, born with a cleft lip and palate, poses with his family.
Cleft Care in Uganda Today
Uganda has the 8th highest birth rate in the world. As a result, demand for cleft services remains high and continues to grow. Families predominantly reside in rural areas, often several hours’ drive to the nearest health centre.
The movement of goods within the country is complex and can be dependent on road conditions, weather, and local politics. Uganda has been particularly affected by global inflation. Increasing costs of food can quickly increase instances of malnutrition - a barrier to a child's safe cleft surgery.
Cleft services are centralized to the Kampala-Entebbe region and the prevalence of cleft specialists is scarce. For families, this means long travel distances and time away from work to access care. Transforming Faces is partnering to increase awareness of cleft at a national level and to make Comprehensive Cleft Care accessible to all families regardless of where they live.
Fast Facts
- Population: 47,250,000
- Capital: Kampala
- Below Poverty Line: 42%
- Cleft Incidence: 1,500+/year
Key Challenges
Transportation Assistance
84% of the country’s population live in rural areas that are not equipped with specialized health personnel or cleft services. This results in lost wages and significant travel for families to access hospital-based care.
Newborn Nutrition
Many children in Uganda struggle to reach a healthy weight for timely surgery. Families often lack resources and need to be provided counselling to breast or bottle feed a child born with cleft.
Community Engagement
Cleft is widely perceived as a family curse or punishment from god. Many parents feel forced to hide their newborn. Without community engagement workers, families would have no awareness of how to get help.
Parent Support Video: What is Comprehensive Cleft Care?
In collaboration with our partner team, animated videos highlighting different aspects of Comprehensive Cleft Care in a Ugandan context were created in several local languages. Health professionals and community workers use them to educate families about what to expect through the cleft care process.
Program Successes
Hospital visits have been made possible through no-cost transportation assistance last year
Nutrition packages were distributed to patients in need of additional resources to treat or prevent malnutrition
Patients accessed cleft care at our local partner hospital amounting to 3,258 treatments last year
“We were given nutrition packages, transportation assistance, and regular cleft care. With my little earnings, there is no way I'd have managed to pay for care. I thank you for the support of my son’s rehabilitation. I have won the battle!”
- Naava, Kisakye’s mother
Stories from Uganda
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…
Oscar is the fourth child in a growing family living in the rural Kanungu district of Western Uganda, a 10 hour drive from the nearest cleft centre. Upon Oscar’s birth, his mother Judith was given the news that every parent dreads: there is something seriously wrong with your baby — and nothing can be done.…
Ivan and Jamirat live modestly in central Uganda’s Rekai district, working as a mechanic and a seamstress. When Jamirat discovered that she was pregnant, the couple was elated. They decided to name their firstborn child Yvonne, and couldn’t wait to welcome her into their arms. It came as a shock when, upon delivery, the midwife…
Betty and her twin brother were born in the remote Napak district of North Eastern Uganda. As members of the Karamojong people, a nomadic cattle-herding community, Betty’s family live half a day’s drive from the nearest cleft centre. With no exposure to cleft, Betty’s father was left with hard questions and few answers. Was this…
Kyomuhendo was expecting twin girls, but she was shocked to discover that her daughter Prossy was born with a cleft lip and palate. Her midwife was quick to identify the common birth anomaly, affecting an estimated 1,100 births in Uganda each year. She referred Kyomuhendo to Transforming Faces’ local partner, CoRSU Rehabilitation Hospital. CoRSU not only…
You’re listening to Caring for Cleft, an audio series product to you by the team at Transforming Faces. Caring for Cleft tells stories of comprehensive cleft care around the world. Episode 4: CLEFT SURGERY IN EAST AFRICA – PROGRESS TO CELEBRATE! Episode Overview: 20 years ago, treatment options for children born with cleft in a…
Our Partners in Cleft Care
TF has been supporting partners in Uganda since 2018.
Our Partnerships in Uganda
- CoRSU Rehabilitation Hospital, Entebbe