Expanding Our Reach
Over the past 3 years A-BE-C has helped facilitate surgeries for children with bladder exstrophy in Uganda, and trained Ugandan surgeons in India with the goal to work with Uro Care Hospital to build a medical facility where children can both undergo surgeries and receive follow up treatments.
Pictured left to right: Ntah Smyth (social worker), Dr. Situma Martin, Tair (Ibriham’s father), Janet Gibson, Pamela Artigas, Ibriham, Ellen holding her daughter, Treasure
Making an Impact in Uganda
The success of this collaboration has led to a five-year initiative with Uro Care Hospital, under the leadership of Dr. Stephen Wayta (Uganda) and Dr. Ranjiv Mathews (USA), in partnership with a US pediatric urological surgical team who are experts in the surgical treatment and ongoing care of bladder exstrophy.
A-BE-C is also working in collaboration with Uro Care Hospital to identify the patients, facilitate the travel and immigration process, provide family educational resources for ongoing treatment, and build awareness of this program to physicians and hospitals to further their training.
Exstrophy families meet for the first time at Uro Care Hospital to prepare for surgery
Janet Gibson, Dr. Ranjiv Mathews, Pamela Artigas touring the new UroCare Hospital
Most of the world lacks access to safe, affordable and timely surgical care of complex urological conditions such as bladder exstrophy. To complicate matters, very few surgeons worldwide are qualified to treat these children. As a result they are abandoned and left untreated, and require multiple surgeries, many of which are unsuccessful. The children suffer some or all of the following complications:
- Cannot walk or even sit comfortably and are continuously wet, causing serious ongoing infections
- Endure multiple complex surgeries requiring lengthy hospitalizations and a lifetime of invasive tests and procedures
- Are ostracized and excluded from receiving an education, resulting in inability to earn a living
- May not be considered eligible for marriage, causing life-long hardships on their parents
- Feel ashamed and alone which impacts the child’s psychosocial development
- Will eventually go into kidney failure or die of bladder cancer, if not properly treated
A-BE-C and UroCare Hospital Collaborate for First Annual Exstrophy Workshop
Tair sharing Ibriham’s medical records with Dr. Situma Martin and Dr. Ranjiv Mathews
This October, Urologists, Surgeons, Fellows and students from Uganda will join urologists and fellows from College of Surgeons of East, Central and Southern Africa (COSECSA) to learn valuable skills, strengthen partnerships and create a greater awareness about the exstrophy condition and care. Surgeons from 14 countries will gather to teach, train and learn from one another. The workshop will be a platform to discuss multidisciplinary comprehensive treatment, review and treat previously repaired patients, participate in pre-surgical workups and investigations, as well as additional teaching and training sessions.
This workshop will do more than just provide surgical care to exstrophy patients. It will serve as an educational camp for patients and their families and provide a place for them to share stories and offer encouragement.