Living with bladder exstrophy in Uganda: Rachel’s story

A team from A-BE-C, including Executive Director Pamela Block and Board Member Janet Gibson visited several bladder exstrophy patients living in Uganda in September 2018. Pamela Block shares the following reflections.


Rachel (left) with Pamela Block. Although Rachel’s bladder is now closed, she is still wet and she needs additional surgeries.

It takes some time to reflect on the enormity of the challenges of life with bladder exstrophy in Uganda. The stories are hard to tell, and I’ve struggled putting my thoughts on paper. There’s one girl in particular, who was abandoned at birth due to her birth defect, who haunts my thoughts.

Hidden in a mud hut in a remote village

I first heard about Rachel* in 2016 when I was contacted by the director of Hospice Jinja in Uganda. The director had made a routine visit to the remote village of Wabulongu-Magamaga where she happened upon Rachel, a young girl of 13 or 14 (no one is sure of her birth date or even her age).

She wrote that Rachel has spent her entire life hidden in a small room on a dirt floor, wrapped in a sheet to hide her condition from the neighbors and the 13 cousins her Jaja (grandmother) has the burden of raising. Rachel had never gone to school. She’d never had any training. She’d never stepped outside the four walls of her 10 by 10 mud hut.

Rachel's jaja (grandmother)

Rachel’s jaja (grandmother) cares for her and is raising 13 other children.

Camping for weeks outside the hospital to await surgery in Uganda

After recognizing Rachel’s condition and her limited options, Hospice Jinja was able to find a local surgeon who would close her bladder. So Rachel and her Jaja traveled to the community hospital in Kampala and camped outside for weeks, awaiting their turn for medical care.

After receiving a relatively successful surgery, Rachel returned home and, for the first time in her life, she finally had hope.

Rachel has hope for the future, but needs supplies and more surgeries

Although her bladder is now closed Rachel is still wet. And she needs additional surgeries. Because her family cannot afford pull-ups or washable continence wraps, she makes stacks of grass mats to sit on and replaces them several times a day.

A visit to meet and visit with Rachel was a top priority on my recent trip to Uganda. Her face lit up when I praised her beautiful handiwork. She shared her dream of becoming a seamstress.

Once frightened and withdrawn, Rachel now ventures from her hut and sometimes even works in the fields.

Rachel

Rachel’s family cannot afford pull-ups or washable wraps, so she makes stacks of grass mats to sit on and replaces them several times a day.

I loved spending the day with Rachel and while I was sad to leave her, I know I will see her again. She is one of the five children who will have an additional surgery next year when A-BE-C returns to Uganda with a surgical care team.

$100/month for supplies to stay dry makes trade school possible

Until then, she needs supplies that will allow her to stay dry. This is crucial for her to attend trade school. But more importantly, she continually fights infection and her skin is breaking down from being constantly wet. Supplies cost a little over $100 a month, an impossibility for her.

By working together we have an opportunity to change Rachel’s life. Please consider supporting A-BE-C so we help her live up to her greatest life purpose and potential.

Pamela Block and Rachel in September 2018. Rachel hopes to be able to purchase the supplies she needs to stay dry so she can attend trade school to become a seamstress.

*Name has been changed to protect privacy.


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 donate whatever amount is right for you.

You can also set up your own campaign and approach your employer about a corporate match programMost 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.