CHLA conference connects families navigating childhood bladder exstrophy

Children's Hospital Los Angeles hosted the annual Association for the Bladder Exstrophy Community (ABEC) conference, bringing together nearly 100 patients and families from across the country and globe.

As one of just 10 ABEC Centers of Excellence nationwide, CHLA is a major referral center for bladder exstrophy, a rare and complex condition in which the bladder and related organs develop outside a baby's body.

Along with educational sessions on the latest surgical and medical approaches, this year's conference offered expanded opportunities for patients and families to learn from each other.

We put the families front and center. We wanted it to focus on what is most important to them as they navigate the challenges of living with this condition."

Joan Ko, MD, Associate Chief of Urology, Director of the Complex Pediatric Reconstructive Urology Program, and Co-Director of the Colorectal and Pelvic Anomalies Center at CHLA

Sharing expertise across specialties

At the conference, held July 17-18, CHLA specialists shared expertise on issues that can affect people with bladder exstrophy throughout childhood and beyond. Presenters included:

- Scott Sparks, MD, Surgical Director of the Comprehensive Urinary Stone Program at CHLA, who discussed kidney and bladder stones

- Jaya Punati, MD, a pediatric gastroenterologist and Co-Director of the Colorectal and Pelvic Anomalies Center, who discussed constipation in patients with bladder exstrophy

- Michelle SooHoo, PhD, a clinical psychologist dedicated to Urology, who shared strategies to help children, teens, and adults stay engaged with their medical care

In addition, a large portion of the conference was dedicated to small-group discussions led by two adults with bladder exstrophy and the mother of a child with the condition. Physicians and other specialists participated as clinical resources, but patients and families drove the conversations.

Whom do you tell about bladder exstrophy?

One of the most compelling discussions focused on a challenging question many families grapple with: Whom do you tell that your child has bladder exstrophy?

Parents first shared how they try to balance their child's privacy with the need for support from family and others. When organizers posed the same question to teens and adults with bladder exstrophy, perspectives varied widely.

Some were glad that people around them knew about their condition; others wanted to decide for themselves when to share that information.

"There isn't one right answer," Dr. Ko says. "It is a very personal decision to make as a family."

Learning from patients of all ages

For Dr. Ko, the conference reinforced the importance of connecting patients with specialists who have extensive expertise in treating this rare condition.

"Some institutions never see a child with bladder exstrophy," she notes. "It's critical that patients and families are seen at a Center of Excellence like CHLA."

Adult attendees also shared their experiences living with this condition over the long term.

"Seeing so many adults with bladder exstrophy who are healthy and thriving was inspiring," Dr. Ko says. "It's a reminder of the impact we can have by providing the right care early on."