Texas Children’s hosts international conference for Hirschsprung disease

October 15, 2019

Texas Children’s Hospital recently hosted the 7th annual REACH (Research, Education and Awareness for Children with Hirschsprung Disease) Symposium. More than 60 parents and patients traveled from 10 states – including California, Colorado, Florida, Louisiana and Oregon – with additional families participating via livestream, making it the best-attended symposium in REACH’s history.

REACH is an international, parent-led non-profit organization committed to increasing awareness, promoting education, connecting families and supporting research initiatives for Hirschsprung disease, which is a congenital condition of the colon. Patients born with Hirshsprung disease have severe colon motility issues due to absence of nerve cells in the affected segments of the colon. These children suffer from intestinal obstruction, colon infections and fecal incontinence. REACH contacted Texas Children’s more than a year ago to discuss holding the symposium, due to the hospital’s outstanding reputation in the field of colorectal surgery, and specifically for its work with Hirschsprung disease patients.

In addition to hosting and organizing the event, Texas Children’s was able to put forth its expert multidisciplinary team, which cares for patients with this disease.

Dr. Danielle Hsu and Dr. Kristy Rialon gave presentations on the surgical management of Hirschsprung disease. Dr. Danita Czyzewski from Psychology discussed how parents and children might better cope with this condition. Talks from Jasia Correa and Simone Romero highlighted Texas Children’s Pediatric Pelvic Floor Physical Therapy Program. Dr. Amaka Akalonu gave a lecture titled, “When Things Don’t Go as Planned: Motility and Sphincter Issues.” And Akalonu’s colleague and fellow gastroenterology motility expert, Dr. Bruno Chumpitazi, participated in a physician panel discussion, moderated by Dr. Timothy Lee, pediatric surgeon and Texas Children’s Colorectal and Pelvic Health Program director.

In addition to participating in presentations and discussions, attendees also got a firsthand look at some of Texas Children’s world-class facilities, including Lester and Sue Smith Legacy Tower and Mission Control, and had the opportunity to interact with our Disney displays.

Colorectal and Pelvic Health at Texas Children’s

A highly skilled, multidisciplinary team of specialists at Texas Children’s Hospital offers the full spectrum of care for congenital disorders of the colorectal and urogenital systems in Texas Children’s Colorectal and Pelvic Health Program.

Watch the video to learn more.

The program comprises four different specialties – pediatric surgery, pediatric urology, pediatric and adolescent gynecology, and gastroenterology – and provides treatment for several disorders and developmental anomalies, including Hirschsprung disease, imperforate anus, cloacal malformation, cloacal exstrophy, and severe idiopathic constipation.

Regardless of the disorder, the team works together to develop a customized approach to care for these complex, and often sensitive, medical conditions. Specialists collaborate to identify the patient’s specific issues and determine the best path to a positive outcome and improved quality of life, whether through surgery, medication or some combination of treatments. Additionally, the team has focused on improving patient care through clinical research and development of best practice pathways to standardize and streamline clinical care for this complex patient population.

“This hallmark of the program is providing multidisciplinary collaborative care,” said Lee. “Even though these conditions aren’t common, we’ve seen more and more of them at Texas Children’s as our patient volume has grown. Parents can be confident when they come to us that they will be receiving truly comprehensive, collaborative care delivered by experts who have been treating these kinds of patients for years.”

Learn more about the Colorectal and Pelvic Health Program.