Genital and Reproductive Atypical Development Program Prioritizes Multidisciplinary Care of Pediatric Patients With Disorders of Sex Development
The Genital and Reproductive Atypical Development (GRAD) program developed at NewYork-Presbyterian Hospital provides world-class care for patients with congenital atypical genitalia and reproductive development.
Both of NewYork-Presbyterian's pediatric locations, NewYork-Presbyterian/Morgan Stanley Children's Hospital at Columbia University Medical Center and NewYork-Presbyterian Hospital/Phyllis and David Komansky Center for Children's Health at Weill Cornell Medical Center, work together to help patients who require treatment for disorders of sex development, OEIS complex (omphalocele-exstrophy-imperforate anus-spinal abnormalities) and anorectal malformations.
Dealing With Stigma
The program was developed in response to increasing demand for specialized care for patients with all disorders of sex development. In 2006, the term DSD—for disorders of sex development—was established to remove the stigma associated with the terminology then used to describe many of the individual disorders. By definition, children with abnormalities in genetic, reproductive or anatomic issues were grouped under one umbrella, yet "DSD" didn't change that stigma or negative connotation for many of these patients.
Around that time, Dix Poppas, MD, Chief of Pediatric Urology at NYP/Komansky Center and Richard Rodgers Associate Professor of Pediatric Urology at Weill Cornell Medical College, began working with patients with congenital adrenal hyperplasia (CAH). These female babies are born with an adrenal insufficiency that causes high levels of androgens to circulate during fetal development. These otherwise typical female patients develop varying degrees of masculinized genitalia. Dr. Poppas surveyed his patients and found that more than 85% believed that the term DSD was derogatory and negative in their case because there is little question about the gender or gender education of these pediatric female patients.
"Even with severe levels of genital atypia, the patients with CAH tend to be raised as females and do very well," he said. "Gender identity almost always remains as female, and the gender assignment at birth is rarely questioned."
In 2012, Dr. Poppas opened the Comprehensive Center for Congenital Adrenal Hyperplasia at NYP/Komansky, which is now the largest referral center for CAH patients and was named the nation's first Center of Excellence for CAH patients by the Congenital Adrenal Hyperplasia Research Education and Support Foundation. A team of endocrinologists, urologists, surgeons, nurses, dietitians, reproductive specialists and psychologists work together to help patients and their families from childhood to adulthood.
To further remove stigmatizing and negative connotations for patients with other atypical genital disorders, Dr. Poppas and others created the GRAD program as another multidisciplinary center. The program doesn't include terms related to "sex" or "gender," and the name implies patients are graduating and moving forward. "Creating this program required a different set of specialists, particularly in surgery, to help these patients," Dr. Poppas said.
Urology colleagues at NYP/Morgan Stanley Children's focus on these disorders, which include anorectal malformations and bladder exstrophy. The two campuses work together with endocrinologists, psychologists, geneticists, reproductive physicians, nephrologists, urologists, surgeons, radiologists and anesthesiologists to help patients. "We arrange meetings for the family with specialists as needed to develop a seamless program that gets the children from where they are to where the family would like them to be," Dr. Poppas said. "We want to explain all of the options the child has—both medically and surgically—and work with the family as a team to help them make the best decision."
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