The Burden of Facial Clefting and How its Global Impact can be Addressed by NGO led Global Partnerships Professor Michael J Earley The Childrens University Hospital Dublin

The Cleft Burden

A Generational Burden

The Extended Burden v The Family… Bonding problems Guilt Guilt Ignorance / Fear Ignorance / Fear ❖ Society… Outcast Outcast Unschooled Unschooled Unemployed/Unemployable Unemployed/Unemployable

OUR GOAL OUR GOAL The goal of Operation Smile is to provide free reconstructive surgery for facial clefts and other congenital craniofacial anomalies.

The REALITY v Neonatal and Infant Death v Poor Results to Lip Repairs v Poor Speech Results v Palatal Fistulae v Poor or Absent Dentition v Poor Growth

The PROBLEMS v In developing countries, the most significant problems lie in the social, geographical, and economic disparities between members of the population.

The PROBLEMS v For the poorer section of the population plastic surgery is unaffordable; there are no resources, access to any services is very difficult and the quality of that service if reached may be inadequate.

Transport Variety

The Oversimplified Solution v GO IN v TREAT and “CURE” v TEACH HOW TO DO IT v LEAVE “THE PARACHUTE MISSION”

Parachute Missions vs Service Delivery Programme vs Sustainable Development

The Authors Experience with Operation Smile Missions v Minsk, Belarus v Harbin,China v Settat, Morocco v Casablanca, Morocco v Battembang,Cambodia v Hai Phong, Vietnam v Asuncion, Paraguay v Addis Ababa, Ethiopia v 2004 v 2005 v 2006 v 2007 v 2008 v 2009 v 2010 v 2011

MISSIONS v INTERNATIONAL MISSIONS v INTERNATIONAL SUPPORTED LOCAL MISSIONS v LOCAL MISSIONS v TEACHING MISSIONS v SPECIALIZED MISSIONS (CRANIOFACIAL AND MICROSURGERY)

A Typical International Mission v Medical Screening (two days) v Surgery Selection v Pre-Op Care v Safe Surgery (five days) v Post-Op Care v Ongoing Follow-up

IDEAL CARE is Team Care v Nursing v Dietician v Speech Pathology v Plastic surgery v Pediatrics v ENT v Psychology v Dentist v Orthodontics v Genetics

CLEFT CARE CENTRES

CLEFT CARE CENTRES INDIA

Capacity Building (1) v Start with a focused Vision and Mission v Be prepared to engage ALL interested parties v Form Partnerships

A Few of the Partnerships v Johnson and Johnson (Ethicon) v Marriott Hotels in China v Latter Day Saints Charities v Rotary Worldwide v The Peace Corps v UNICEF v World Vision v Partners in Health

Capacity Building (2) v Assess the Pre Existing Need v Are those needs being met? v What about other NGOs with Same Goals?

Capacity Building (3) - Organizational v An efficient organization v Strong leadership that knows how to devolve and share responsibility v Ability to disseminate knowledge v Transparent accountability in…. Finances Finances Organization Organization Credentialling Credentialling Outcomes Outcomes

The Importance of an Experienced Organization

1 week follow up EARLY OUTCOME v Documenting the early results v Providing confidential feedback to the surgeon

6 MONTH and 1 YEAR Follow-up

Capacity Building (4) v Continual reassessment v Self Reflection v Ability to change

Op Smile Statistics from 2011 Annual Report v 18,000 surgeries v 124 sites v 164 missions v 13 comprehensive care centres v 60% of surgeries were in LOCAL missions or in care centres v 4% expenditure on administration v 23% expenditure on fundraising

The Future v Support Capacity Building v Education/Instruction v Human Resource v Retention of expertise (staff) v Avoid Volunteer Fatigue v Maintain Centres v Manage other Health Care Priorities

Acknowlegements v Luis Bermudez …. v RubenAyala …. v Natalie Miller…. v The Patients………………