In the heart of Uganda, a child is born with bladder exstrophy, a rare and complex congenital condition where the bladder develops outside the body. In many cases, this diagnosis is a death sentence, not because the condition is untreatable, but because until recently, no one in the region knew how to care for it. 

Anthony Schaeffer, MD, MPH, a pediatric urologist from University of Utah Health, partnered with a team of global experts to change that. The mission of the Association for Bladder Exstrophy Community (A-BE-C) goes far beyond surgery. They are working to ensure that children receive life-saving care, families stay together, cultural stigmas are dismantled, and Ugandan clinicians gain the knowledge to carry this work forward for future generations. 

Among the team is pediatric nurse Alexa Penton, who works closely with patients on the ground, helps families navigate social and emotional challenges, provides support during treatment, and teaches caregivers how to manage post-operative care. Her work ensures that the program addresses both the medical and human aspects of exstrophy care. 

“It became clear that this wasn’t just about surgery,” Schaeffer said. “Exstrophy is a complex condition. It involves mental health, trauma, stigma, and post-operative care. So, we are building a multi-pronged approach to teach Ugandan providers and caregivers how to deliver world-class exstrophy care.” 

A Lack of Knowledge, Resources, and Hope 

Before 2015, Uganda had no local expertise in treating bladder exstrophy. Families were often told to take their babies home to die. The stigma surrounding the condition was, and still is, deeply damaging. Children were hidden away, sometimes only allowed outside at night. In extreme cases, families were encouraged to abandon them. 

“Across Uganda, there’s not readily available or reliable information about exstrophy,” Schaeffer said. “Some families are told their child is cursed. Some are advised to bury the children alive or leave them in the jungle. These practices still exist.” 

There are fewer than 20 urologists in all of Uganda, a country of over 48 million people. That is roughly one urologist for every 2.3 million people. Most families cannot afford to travel to hospitals. For many, the cost of just traveling exceeds a month’s income. Others leave the country seeking care in Kenya or India. 

This is not a condition that can be treated once and forgotten. It requires multiple procedures over many years. Families in rural or low-resource settings have historically had no access to this kind of care. 

“Imagine having a child who requires special care when you make $500 a year,” Schaeffer added. 

There are no national birth defect registries in Uganda, and most births take place at home. Some children born with bladder exstrophy do not survive, and those who do are often left untreated and isolated, facing a lifetime of urinary incontinence, shame, and no community support. There is also extreme stigma and shame faced by the families of these children. 

Building a Sustainable Model of Care 

A-BE-C and Schaeffer organized a team of global experts who believed in bringing care to patients. The initiative quickly expanded from surgical intervention to a broader mission of sustainability, involving surgeons, nurses, social workers, and mental health professionals. 

Rather than sending patients abroad, the goal was to train Ugandan medical staff to care for their own communities. Initially, the team operated out of a private urology hospital where care was not free. A-BE-C spent more than $50,000 annually covering patient expenses. 

They later moved to the Children’s Surgical Hospital in Entebbe, a fully charitable facility run by the Italian nonprofit Emergency. The hospital offers free care and provides all necessary medical supplies. This shift allowed the team to redirect resources to transportation, food, and housing during “Family Days” for patients and caregivers. Funding remains a major challenge, with recent grant proposals aiming to bridge the gap. 

More Than Just Surgery 

What works in Utah does not always translate in Uganda. Political hurdles, supply chain breakdowns, and cultural complexity make sustainability difficult. The death of a talented Ugandan surgeon the team was mentoring, along with the COVID-19 pandemic and an Ebola outbreak, tested the program’s resilience. 

“I wasn’t planning to lead everything,” said Schaeffer. “But there was a void, so I stepped up to keep progress moving.” 

In addition to setting nursing protocol, Penton emphasizes the human dimension of care. She observes how stigma, abandonment, and social barriers affect patients daily, ensuring the Ugandan team is trained to address both medical and emotional needs. 

Changing Generations, Changing Culture 

The impact goes beyond the operating room. When children receive care, families stay together. Mothers are no longer blamed. Parents are empowered to advocate for their children, and communities slowly shift. 

Over many years, Penton has witnessed dramatic transformations in patients. One young man, born with bladder exstrophy, spent his life incontinent and withdrawn, avoiding eye contact, expecting judgment. On a recent visit, he arrived as a completely transformed man, smiling, laughing, wearing bright colors, and confidently engaging with the team. Overwhelmed by the change, the team sobbed together, moved by how dignity, care, and support could ripple through a patient’s life and community. 

Healing More Than Bodies 

Schaeffer performs more bladder exstrophy surgeries in 10 days in Uganda than he does in a year at home. The work is exhausting but deeply meaningful. 

“First of all, I think the biggest thing is that it’s completely exhausting. But my wife likes it when I go because I come back mentally refreshed.” 

The opportunity reshaped his approach to surgery in the United States. Cultural priorities, like fertility over continence, led him to rethink procedures. Teaching across cultures has also sharpened his communication, empathy, and teaching. 

This work challenges assumptions and centers on people. 

These are real families: a 10-year-old boy bullied for his condition, a mother raising her child alone after being abandoned. These are the stories that keep Schaeffer going. 

Capacity-building means stepping back so others can step in. 

“It’s kind of like fostering a puppy. You know you have to give it up eventually, and it’s heartbreaking,” Schaeffer explains, “but the real impact is making sure this care continues long after we’re gone.” 

Changing Minds and Saving Generations 

Schaeffer’s work is about restoring dignity, protecting families, and shifting long-held beliefs. Penton’s consistent support ensures the mission extends beyond surgery into cultural transformation and community empowerment. 

“This isn’t just healing one child,” Schaeffer said. “We are changing minds and saving generations.”