Annette’s future with bladder exstrophy
When seventeen-month-old Annette was first born with bladder exstrophy, her mother assumed her condition was fatal. “I did not understand the whole situation,” she says. “I had not seen or heard about this condition before, so I thought I would lose my baby.”
It was not until Annette was transferred from her local hospital in Ghana to a nearby teaching hospital that her family learned her condition could in fact be treated. But despite the encouragement they finally found at the teaching hospital, the family’s journey toward correcting their daughter’s bladder exstrophy has been anything but smooth.
On October 19th all of this will change when, thanks to A-BE-C, the Qatar Foundation and the Bladder Exstrophy Global Care Team, the smiling toddler who loves music and dancing will finally get the care she needs.
Before Annette’s family found A-BE-C, she went through two failed surgeries. Incontinence and frequent infections followed as a result of her condition. Without surgery to also reconstruct the many complex urological structures and her improperly formed pelvic bones, she would succumb to a lifetime of pain, repeated infections, and social outcast.
After each failed surgery, Annette’s family was devastated, but determined. They knew they had to look elsewhere for answers. To their surprise, they learned that not only were there no local urologists trained to properly treat bladder exstrophy, there are in fact no medical centers in all of Africa equipped correct the rare condition.
With the help of an uncle living near Boston, the family eventually found A-BE-C and began the process of scheduling a surgery in Doha, Qatar to be performed by Dr. Pippi Salle, with the support of Dr. Jason Howard, Chief of Pediatric Orthopedics at Sidra Hospital. Dr. Mansour Ali, Chief of the Department of Pediatric Surgery at Hamad Hospital and Dr. David Sigalet, Chief of the Department of Surgery at Sidra Medical and Research Center are also fully supporting the case. The surgical team will donate their services, but the steep cost of travel, hospital bills for a month-long stay and medical visas still presented an initial hurdle. The family launched a Go-Fund-Me Campaign and, with combined support from the Qatar Foundation and the A-BE-C donor community, secured enough funding to proceed with the surgery.
“It’s been a long process,” says Pamela Block, Executive Director of A-BE-C. Block explains that for every surgery A-BE-C sponsors, preparations take between six to nine months to complete. In addition to securing funding, medical visas must be applied for and time in the operating room must be arranged. In Annette’s case, a significant skin infection caused further delays. Her surgery will take place nearly ten months after the process first began.
As Block points out, although the wait can be excruciating for families, a child’s chances at a high quality of life are far greater when the time is taken to plan for a successful surgery with a properly trained team. Says Block, “Annette will be under the care of one of the world’s leading experts in bladder exstrophy. Having this opportunity will affect her whole life.”
Although they are anxious and frightened as they await what will be their daughter’s third surgery in her short lifetime, Annette’s parents are looking forward to the future. “A-BE-C has been there for us, coordinating the entire process to make sure Annette gets the help she needs,” says her mother. “They came in at the time that all hope was gone, and gave us hope again.”
A global need
Annette and her family are not alone in their struggle to find proper care for a child born with bladder exstrophy. “There is a huge need worldwide,” says Block. “Annette is one of dozens of identified children we need to help in Africa alone.”
In January 2017, A-BE-C will sponsor two urologists from Africa to train with the Global Care Team in India. With your help, children born with Bladder Exstrophy in developing nations such as Ghana will be able to receive proper care close to home and not have to endure the heartbreaking journey that Annette and so many children like her have faced. Please donate today.
