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.

Comprehensive Cleft Care professionals in Africa are innovators. Traditional volunteer outreach/mission models are being replaced – new systems are required.   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!  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 & Dr. Francis Tegete and two speech therapists: Wedise Mekonnen & Adam Mang’ombe—who are transforming the landscape of cleft care in East Africa.     What led them to specialize in cleft? What motivates their commitment to pursue team-based care?     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.

A shared experience for everyone with a cleft lip is standing out from their peers. Even after successful surgeries, a facial difference can remain. In this episode, we welcome James Partridge (OBE) from the UK, Indian surgeon Dr. Manu Prasad, and Julieta Perondi from Argentina to discuss the difficulties of living with a facial anomaly, as well as strategies that support families in seeing their children thrive. We note with sadness James Partridge's passing prior to the publication of this podcast.

Learn how a new training tool called the 3D Cleft Palate Simulator is transforming surgical results and improving the way surgeons are performing cleft palate repairs. In this episode, we speak with the creator of the simulator, Dr. Dale Podolsky, as well as Dr. Christopher Forrest, Division Head of Plastic & Reconstructive Surgery at SickKids Hospital. We also hear from Dr. Carlos Giugliano and Dr. Veronica Caller Farfan on how the simulator has been used to train surgeons in Latin America.

Having a cleft can have a lasting impact. For our guests - Nang Ei Ei Phyu (Gift), Angelica Campos and Dr. Camila Caro - their unique cleft journeys drew them in to pursing careers in the cleft profession. Join Executive Director, Hugh Brewster, as we explore how the impact of cleft lip and palate at a young age has shaped the future of these inspiring comprehensive cleft care professionals.

20 years ago, treatment options for children born with cleft in a typical East African village were very limited. But over the past two decades, local health professionals have been growing new approaches to address the needs of children born with cleft lip and palate in Africa, and beyond. Today’s episode of Caring for Cleft focuses on an area of burgeoning hope and progress: the inspiring efforts of a growing number of surgeons based in East Africa who have become strong advocates for comprehensive cleft care for all. We speak to Dr. Mekonen Eshete in Ethiopia and Dr. George Galiwango in Uganda to learn more.

Children born with cleft often require speech therapy to learn to communicate clearly. In 2019, the first cohort of speech therapists will be graduating from a brand new undergraduate speech program in Ethiopia! Today, we hear from Dr. Mekonen Eshete and Berhane Abera at Yekatit 12 Hospital, Marci Rose from TAAAC, and two of the students themselves about this new program. Learn more at: transformingfaces.org