Eswatini Rural Boy’s Struggle: Bladder Exstrophy and Dignity

By Nokukhanya Musi

Born into a web of challenges, a young boy with bladder exstrophy fights for his chance at an everyday life in the impoverished rural community of Shewula in Eswatini. His birth marked not just the arrival of a new life but the beginning of a daunting battle against societal stigma, inadequate healthcare, and the relentless grip of poverty.

For 10-year-old Phiwoyinkosi Masimula, each day is a testament to resilience as he navigates the complexities of his condition while clinging to the hope that a brighter future awaits.

In the early morning light of a cool June day in 2017, the quiet hills of Shewula cradled the birth of this baby boy. Its arrival was met not with the usual cries of a newborn but with a startled, persistent wailing that echoed through the modest homestead.

The infant’s tiny body bore an unmistakable anomaly: his bladder lay exposed on the lower abdomen, a rare condition known as bladder exstrophy. Bladder exstrophy is a rare congenital defect affecting approximately 1 in 30,000 to 50,000 births, where the anterior bladder wall fails to fuse, leaving the bladder exposed.

It often includes other complications and may require staged surgical repair.

The sight shocked his grandmother, Gogo Busisiwe Nhlabatsi, who had never witnessed such a birth in her village. A mix of fear and concern washed over her as she held the delicate infant, realising the challenges that lie ahead.

At 62 years old, Gogo walks with the aid of two canes and relies on Eswatini’s elderly grant—recently increased from E 500 to E 600 per month (about US $30).

“Although I am old and have health issues, I made a decision that I wouldn’t stop caring for him. The grant I receive barely covers our daily needs, but we make do”, she says.

The boy’s mother, Nokuthula Mnisi, left him with Gogo as a toddler and visits occasionally; day-to-day care falls to his grandmother.

Phiwoyinkosi wears disposable nappies (Pampers). In Eswatini, a pack costs roughly E180–E550* (US$ 10–$30). The used nappies are buried in a shallow pit dug behind the homestead.

From the moment the condition was noticed, Gogo embarked on a relentless journey through the health system.

“We ran from clinic to clinic, and each time they said they’d figure it out, but the answers never came,” she recalls.

Financial exhaustion quickly depleted the modest elderly grant. A South African doctor offered tentative hope, but the family was told to wait in Eswatini.

In 2024, the Luke Commission (TLC) was approached; they promised specialist care abroad—a promise they are still waiting to see fulfilled.

The endless wild goose chase for help was frustrating and drained Gogo of the little she had left. To date, Phiwoyinkosi continues to wear diapers and has not yet undergone corrective surgery.

In 2025, at the age of eight, Phiwoyinkosi enrolled at Emajebeni Primary School in Shewula. The headmaster initially refused admission, citing concerns about the child’s age and need for diapers.

Gogo persisted, emphasising that “he may wear a diaper, but his mind is sharp.”

The school eventually relented; he completed Grade 1 and was promoted to Grade 2.

However, the denial of entry delayed his educational development and set him back compared to his peers.

In the face of these challenges, Gogo remains a pillar of strength for Phiwoyinkosi. She makes sure he feels loved and cared for, despite the struggles they face. Together, they navigate the trials of poverty while nurturing the boy’s bright spirit and determination to learn. Gogo’s unwavering love and commitment serve as a beacon of hope in a world that often feels unforgiving.

The realities of families managing rare conditions are further illuminated by insights from Fikile Lukhele, a caseworker at the Deputy Prime Minister’s office.

Her experiences reveal critical gaps in the support system for these families. She explains that rare disease cases often come to their attention through community observation rather than direct contact.

“Unfortunately, we have never been contacted directly by families seeking assistance for rare conditions; we usually find such cases while working in the communities,” she shares.

This lack of direct communication highlights the barriers families face when seeking help, often leading to delays in care and support.

“We’ve discovered during field visits to communities that many people suffer from different ailments and conditions that significantly impact their health and social lives, as well as their financial situations. Counselling is something they need,” Fikile says.

She recounts a recent case involving a child with a rare condition, which she cannot discuss in detail due to ongoing support efforts. However, she describes a successful collaboration.

“After many challenges, we managed to get assistance from organisations in America for this child, who is now being cared for by a family,” she adds.

A significant challenge Fikile faces is the perception of her role.

“As junior officers, we encounter difficulties in getting people to listen to us. They often only respond to our superiors, which can hinder timely intervention,” she explains.

This systemic issue limits frontline workers’ effectiveness in advocating for vulnerable families.

Lukhele emphasises the need for the Ministry of Health to play a more proactive role, particularly during immunisation efforts.

“I often wonder what happens during immunisations at clinics. They should identify cases early and provide assistance, rather than us discovering these issues only when children are older,” she says.

 Lukhele further emphasises the need for increased budget allocation for social work services.

“If the Ministry of Health could invest more in community sensitisation and social support, it could significantly impact families accessing care sooner,” she concludes.

While programs exist that could provide some support, significant gaps remain in specialist care and resources.

As Phiwoyinkosi continues his journey, there is little hope on the horizon. Echo VanderWal, Executive Director of The Luke Commission, admits:

“There are currently no known government-led programmes or clinical guidelines specific to rare diseases in Eswatini,” she explains. “However, we recognise the importance of raising awareness and improving diagnostic capabilities. Many rare conditions likely go undiagnosed, as families often navigate care through existing community structures.”

Echo notes that The Luke Commission is committed to leveraging every available resource for patients like Phiwoyinkosi.

“We have diagnosed and clinically managed several rare conditions, including Duchenne muscular dystrophy and malignant hyperthermia. Our approach emphasises accurate diagnosis confirmed with laboratory testing, along with family education and linkage to specialised care whenever feasible,” she says.

Moreover, she expresses a desire for expanded research and diagnostic efforts on rare diseases and welcomes initiatives that develop policy frameworks focused on rare conditions.

“Increased collaboration—both within the country and through partnerships on regional and global scales—could significantly change the landscape for families facing these challenges,” she explains.

The Ministry of Health has initiated several publicly funded programmes that, while primarily targeting more prevalent conditions, also address rare diseases.

Drawn for comment, Dr Adman Shabangu, Senior Medical Officer at the Ministry, explains that there are existing programmes, such as the Neglected Tropical Disease (NTD) initiative, that oversee conditions such as leprosy, which the country is targeting for elimination, and schistosomiasis, which primarily affects children.

“We have integrated health services to assist in screening, diagnosing, and managing these conditions in schools and health facilities. Funding for these initiatives comes from the national budget, with additional support from UN agencies like WHO and UNICEF,” he further says.

Dr Shabangu also highlights the role of the National Cancer Program, which assists children with childhood cancers by providing funding for treatment and operations.

“There are stakeholders involved in activities related to prevention and linkage to care,” he notes.

While these programmes show promise, the landscape of scientific research on rare diseases remains challenging.

“Unfortunately, we are not yet seeing a significant number of researchers venturing into this field. Attracting funding for rare conditions remains a primary challenge,” Dr Shabangu reveals.

Looking ahead, Dr Shabangu is optimistic about future initiatives, adding that the Ministry of Health plans to further invest in primary healthcare and encourage pregnant women to seek genetic counselling and early screenings.

“We are also focusing on radiological and laboratory diagnostic improvements. However, gaps still exist in the availability of specialists to manage these rare conditions effectively,” Dr Shabangu adds.

Nokukhanya is a National Press Foundation (NPF) fellow for the 2025 Covering Rare Disease Media Fellowship.