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Transition Urology/Congenitalism

At the Center for Reconstructive Urology we have developed a unique, multidisciplinary care program that brings together the best specialists from both NewYork-Presbyterian Hospital and NYP/Morgan Stanley Children’s Hospital. Dr. Steven Brandes (adult reconstructive urologist) and Dr. Shumyle Alam (pediatric reconstructive urologist) are the directors of this unique program. Our program cares for the whole person, from advanced surgical and medical treatments to nutrition, physical therapy, occupational therapy, and methods to maintain a healthy and independent life.

Congenital defects affect the urinary tract more commonly than any other organ system. Such anomalies can affect just one body part, such as the urethra (hypospadias), or they can manifest as a whole constellation of congenital problems that involve multiple organ systems. The common urologic conditions that affect multiple organs are: spina bifida (myelomeningocele), exstrophy-epispadias complex, and cloacal malformations. Such conditions are often accompanied by long-standing problems with bladder and bowel storage and/or emptying – which can severely affect one's social life and overall quality of life.

Because of recent advances in neonatal, pediatric, and surgical care, many children with complex congenital conditions are able to survive into adulthood, as compared to decades prior. In fact, over 90% of spina bifida patients can now live into adulthood. As the overall number of children with complex urologic conditions surviving into adulthood has grown sharply, the transition of care of such patients from the pediatric urologist to the adult urologist is a pressing and urgent issue.

Most pediatric patients are able to find a high level of multidisciplinary care at a pediatric hospital, but adults with the same conditions typically fall through the medical “safety” net and struggle to find quality care. Patients who fail to transition to adult care are at much higher risk of increased kidney damage, urinary infections, sepsis, and stones, as well as dramatically increased healthcare costs.

As children with urologic congenital problems become adults, issues of sexuality, post-pubertal genital appearance and function, urinary and fecal control, fertility, and pregnancy become much more important to the patient and become important components of a fulfilling and independent life. Furthermore, as they advance in age, patients with GU congenital anomalies can develop the typical age-related urology problems of erectile dysfunction, enlarged prostate, and even prostate, bladder, and kidney cancer.

At the Center for Reconstructive Urology our goal is to maximize quality of life and independent living for adults who are born with congenital urologic conditions.