Medical norms in works for congenital sex disorders

The committee, which included paediatric surgeons, endocrinologists, and clinical psychologists from across India, met at AIIMS on May 11

The All India Institute of Medical Sciences (AIIMS) and the Indian Association of Paediatric Surgeons have formed a 23-member committee to discuss guidelines for medically necessary surgeries in children with disorders of sex development (DSD), according to an AIIMS press release issued on Friday.

Medical norms in works for congenital sex disorders

The committee, chaired by Dr Sandeep Agarwala, head of paediatric surgery at AIIMS, concluded that DSD encompasses a diverse range of conditions that should be evaluated individually based on medical necessity. In cases involving serious health risks, the committee said it may be appropriate to perform surgery before a child reaches the legal age of consent.

DSD refers to conditions where a person has characteristics of both sexes due to chromosomal, gonadal, or genital differences. These conditions can manifest at birth, during puberty, or in adulthood. Treatment may include hormone replacement therapy or reconstructive surgery, but healthcare providers typically delay irreversible procedures until children can make informed decisions, unless medically necessary, according to the Cleveland Clinic.

Causes of DSD include genetic mutations, developmental issues during foetal growth, hormone insufficiency, and exposure to certain substances during pregnancy, such as testosterone blockers.

The committee, which included paediatric surgeons, endocrinologists, and clinical psychologists from across India, met in person at AIIMS on May 11. They discussed the need for medically necessary surgeries in children with DSD presenting urgent problems like dehydration, electrolyte disturbances, urinary tract infections, abnormal genital bleeding, inability to urinate normally, abnormal puberty, psychological distress, or risk of cancerous changes in the gonads.

The AIIMS statement emphasized that managing some DSD conditions requires a multidisciplinary approach and shared decision-making among stakeholders. However, the committee noted that in cases with potential for serious health risks and damage, delaying surgery until a child can legally consent may not be feasible.

“The committee reiterated the right to health of a child, as a child has to be upheld and cannot be neglected,” the statement said.