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Live Interactive Discussion on Exstrophy of the Bladder

Pediatric Urology: On Wednesday, November 7, 2007 at 3:00 p.m. EST, Children's Hospital Boston's Center for Bladder Exstrophy Care & Support team will host a live interactive discussion on exstrophy of the bladder, a complex combination of disorders that occurs during fetal development. Diagnosis, surgical treatment, and lifelong management will be discussed in addition to excerpts of a complete repair procedure, taped earlier this year. Also, a family from the support group will share their perspective on having a child with exstrophy of the bladder. This 60-minute Webcast is part of Children's ongoing effort to bring advanced care and technology to specialists and referring physicians around the world, and to educate patients and families about the latest and most innovative medical treatments available.

Bladder exstrophy is a rare, complex congenital anomaly that involves the urinary, reproductive and intestinal tracts, as well as the musculoskeletal system. Approximately 400 new cases of bladder exstrophy are diagnosed each year in the United States, and males are affected 1.5 to 2.3 times more often than females. With bladder exstrophy, the abdominal wall and underlying structures do not properly fuse in utero, when the baby is developing, and the infant is born with the bladder exposed inside-out on the outside of the body. Because the bladder and other structures are exposed, urine constantly trickles onto the skin causing local irritation. Associated conditions can include a widened pubic bone, abnormally-shaped and weakened abdominal muscles, and a shorter than average urethra and vagina or penis. The disorder may occur in varying degrees from mild to severe. It is most often diagnosed by fetal ultrasound, but can be diagnosed at birth.

Children's Center for Exstrophy is known internationally for its preeminent care of these children, caring for 43 newborns with the diagnosis since 1996. "At Children's, the preferred method of surgical treatment is complete primary repair of exstrophy (CPRE), which allows for earlier normal bladder function, leading to optimal bladder growth and development," says Joseph G. Borer, MD director of Children's Center for Bladder Exstrophy and assistant professor of Surgery (Urology) at Harvard Medical School. "Our expert surgeons and clinical staff are some of the most experienced in the world with bladder exstrophy."

"Children with bladder exstrophy are on a unique journey, and our program strives to truly support them every step of the way," adds Rosemary Grant, RN, nursing coordinator for the department of Urology. "With help from the Center for Families, Children's has pioneered efforts in the support and psychosocial development of patients with bladder exstrophy. The Exstrophy Support Group provides education and interaction among patients and families with teen chats, guest speakers, parent-to-parent networking, and medical play for younger children to offer patients and families the support they need at any stage of life."

The Webcast will feature discussions on prenatal diagnosis of bladder exstrophy by Carol E. Barnewolt, MD, co-chief of Children's Section of Ultrasound and assistant professor of Radiology at Harvard Medical School, and Bruce F. Cohen, MD, Maternal Fetal Medicine Division Director, Department of OB/GYN at Beth Israel Deaconess Medical Center and Instructor of Obstetrics and Gynecology at Harvard Medical School. Dr. Borer will join Alan B. Retik, MD, urologist-in-chief, surgeon-in-chief and professor of Surgery (Urology) at Harvard Medical School, in leading a discussion on surgical treatment of exstrophy, while reviewing video from a procedure on a 2-day-old child. And Rosemary Grant, RN, will discuss the Exstrophy Support Group.



Joseph Borer

Joseph Borer, MD, FAAP

Alan Retik

Alan Retik, MD, FAAP, FACS

Carol Barnewolt

Carol Barnewolt, MD

Bruce Cohen

Bruce Cohen, MD

Rosemary Grant

Rosemary Grant, RN

Luanne Nemes

Luanne Nemes, MS, RN