Caring for Cleft

Parent powered advocacy propels cleft care forward. In this episode we listen-in to the insights of three dedicated cleft professionals: Professor Youri Anastassov, Jana Angelova and Gareth Davies.    Together, they are supporting a vision where families, cleft professionals, and NGOs work together to effect change. Their inspiring stories point to the transformation of a generation of cleft patients in Bulgaria.

COVID-19 has unleashed extraordinary disruption to the delivery of cleft care worldwide. In today’s episode, we explore how a diverse group of global cleft professionals is rallying toward seeing children and families receive the best care possible -- even amidst the ongoing pandemic.  Matt Fell (Cleft Charity, UK), Karen Goldshmied (Smile Train, Chile), Jayanth BS (ABMSS, India) and Neeti Daftari (Circle of Cleft Professionals, Canada) offer a window into a novel experiment in sharing learning and seeking cleft care solutions during a global crisis.

In 1999, Transforming Faces was founded with a mission of delivering comprehensive care to children born with cleft lip and palate around the world. Twenty years later, we revisit our history with some of the organization's key stakeholders, including co-founders Jackie Elton and Jo Jamieson, longtime Executive Director, Esteban Lasso and local partner, Suraj Subramaniyan.

Will my child be supported and accepted in our family? At school? In the community?  Beyond the immediate medical concerns of feeding and securing a safe and effective surgery, parents with a cleft-affected child worry about the long-term social, emotional and psychological implications of the condition. While progress has been made in some High-Income Countries (HICs), cleft psychosocial support isn’t often accessible in Low and Middle-Income Countries (LMICs).   This podcast explores the role of psychosocial support within a Comprehensive Cleft Care approach. We speak with Dr. Nicola Stock, who highlights learning from the UK experience, and draw from Julieta Villca Guzman’s insights about integrating cleft psychosocial support in Cochabamba, Bolivia.

<p>Comprehensive Cleft Care professionals in Africa are innovators. Traditional volunteer outreach/mission models are being replaced – new systems are required.&nbsp;&nbsp;</p> <p> With skilled local surgeons in place, addressing the need for speech therapy in their cleft patients is an important challenge. A new generation of cleft teams embrace it!&nbsp;</p> <p> In part one of this two-part series, host Hugh Brewster sits down with four inspiring young professionals from Ethiopia and Tanzania—two surgeons: Dr. Getaw Alamne &amp; Dr. Francis Tegete and two speech therapists: Wedise Mekonnen &amp; Adam Mang’ombe—who are transforming the landscape of cleft care in East Africa.&nbsp;&nbsp; &nbsp; <em>What led them to specialize in cleft? What motivates their commitment to pursue team-based care?&nbsp;&nbsp;</em> &nbsp; In part two, dive into the key challenges that CCC teams face in building new models of care and the role that collaboration plays in overcoming obstacles.</p> <p><br></p>