Bladder exstrophy in Uganda: Undying hope and a long journey for treatment

Left: Ibriham and his father Tair in Ahmedabad, India to receive treatment at the 2017 Operative Workshop on Exstrophy. Right: Janet Gibson visits with Ibriham in India after his surgery.

Ibriham was born with bladder exstrophy in northern Uganda. The condition was unfamiliar to local health workers. Though there was nowhere to turn for help, his father never gave up hope on treatment for his son. At great sacrifice, they traveled to hospitals in Uganda, Sudan, and the Congo looking for help before a connection was made to Association for the Bladder Exstrophy Community (A-BE-C). Treatment was then arranged in India for Ibraham as part of the Bladder Exstrophy Global Care Collaborative’s Operative Workshop on Exstrophy. To get there Ibriham and his father traveled more than a month. Now Ibriham’s parents hope is for diapers so their son can one day go to school.

Janet Gibson, A-BE-C’s Uganda Global Care Liason and Board Member and Tair, Ibriham’s father share their reflections on Ibriham’s journey with bladder exstrophy.

Reflections from Janet Gibson: Uganda Global Care Liaison and Board Member for A-BE-C:

A young couple’s excitement replaced with fear and sadness

Tair and Night were children themselves when they discovered Night was pregnant. Both orphaned at an early age, they never had the opportunity to get an education – not an ideal beginning for a young family.

Nevertheless, the young couple was filled with excitement at the thought of bringing a child of their own into the world. With no family of his own, Tair dreamed of a baby boy who would carry on his name.

But when the baby Tair had dreamed of was born, his parent’s excitement was replaced with fear and sadness. Ibriham was born with bladder exstrophy, a condition unfamiliar to local health workers. Their words to Tair and Night were to “take him home,” assuming the baby would soon die. Night was overcome with sadness and began to lose all hope.

Holding hope for bladder exstrophy treatment, despite lack of resources

But Tair did not give up. He worked in the fields harvesting cassava in the neighboring country of Sudan in order to earn enough money to feed his wife and young son. When he had saved enough extra money, he wrapped up his baby and set out to find help, traveling to hospitals in Uganda, Sudan and even the Congo. But there was no help to be found.

A connection to A-BE-C leads to arrangements for surgery in India

Until finally an organization called One4Another contacted Dr. Martin Situma about a young boy with bladder exstrophy. Dr. Situma immediately contacted A-BE-C, and together they made arrangements for Tair and Ibriham to go to India for surgery in January, 2017.

“This may be our only hope”

Tair and his family live in Northern Uganda, close to the Sudan border. When I asked Tair how long the journey was from their home to the airport in Entebbe, Uganda, he replied, “we left home on December 16th.” I turned around and looked at him and said, “but that was a month ago.” To which he replied, “yes, it was a very long journey.” When Tair heard about the possibility of Ibriham going to India for surgery he told his wife, “this may be our only hope, I want to be the first one there at the airport.”

I’m not sure what that journey looked like for them, how many days they traveled by foot, how many days they traveled by bus, or how many nights they slept outside of the airport, but for this family, this was their only hope. I was moved by Tair’s example of bravery and strength in the face of significant life challenges.

The journey continues with a desperate need for diapers

But this isn’t the end of Tair and Ibrahim’s story. Ibrahim is still wet and can’t afford diapers that would keep him dry and allow him to go to school.

 Reflections from Tair, Ibriham’s father:

When Ibriham was born, his mom just cried and cried. She wanted to kill herself because she had lost all hope. We brought our baby to the village health workers and doctors, but they did not know what was wrong or what to do with our boy. They told us to bring him home.

When we heard about the opportunity to go to India for surgery this past January, we did not hesitate. This will go down in history in my life and in Ibriham’s life. When we have challenges, we will not give up because we will remember this event.

Ibriham prepares to go home

My goal was to get to India and to take my baby home

Ibriham was afraid when we traveled to India, but I told him, ‘do not be afraid – we are going somewhere far away and maybe the people there can help us.’ Ibriham has no friends because he is always wet. There are no disposable diapers in the village and we cannot afford the transport to go to the bigger city to find them.

My dream is that someday Ibriham will go to school.

You can help on November 27th!

A-BE-C is launching a global care initiative with a focus on Uganda for 2019. There will be opportunities for everyone in the community to become involved. Start by marking your calendar for Giving Tuesday on November 27. On that day make a donation of whatever amount is right for you.

You can also set up your own campaign and approach your employer about a corporate match program. Most importantly, please watch for and share Giving Tuesday posts and emails with your friends, colleagues, and family, and encourage them to support the Uganda initiative.

Despite the glaring discrepancy of care and resources, families from around the world who have experienced bladder exstrophy have experienced the same emotions. There is always fear and isolation that goes along with this diagnosis. There’s always a stigma associated with this condition. There is always a feeling of being overwhelmed, of not having enough information, and of having to educate others.

We are all connected, and we can help provide support and hope to those who have none.