Families in India learn post-surgical care for bladder exstrophy

Left: Carolyn Fazzini teaches mom wound care. Right: Worried mom waiting with her 3-year-old daughter in pre-op.

Among the nearly 100 children who received checkups and medical procedures for bladder exstrophy at the operative workshop in India in January 2017, more than a dozen were undergoing complex corrective surgeries. For those children and their families, surgery marks the beginning of a lengthy post-surgery recovery process.

Parents learning wound and pin care

This year, A-BE-C and the global care team was fortunate to work with Carolyn Fazzini, a nurse from Children’s Hospital of Philadelphia, who is spent time teaching families post-surgical wound and pin care. To further support parents of children receiving treatment, A-BE-C produced and printed, post-surgery guidelines in both English and Gujarati.

Common threads between all parents of children with bladder exstrophy

Pamela Block, A-BE-C’s executive director, got the chance to accompany Carolyn Fazzini on her rounds. With the help of a volunteer interpreter, Neha, Pamela was able to spend quality time with each family, providing additional support and learning more about the unique challenges families in India face when they are affected by exstrophy.

Of the time she spent with the families, Pamela says, “A common thread emerged. We all find ourselves feeling alone at times in our struggles. We all want what is best for our children and it breaks our hearts to see them in pain. While there are unique cultural differences in every country A-BE-C serves, families living with exstrophy have more in common than not.”