Project Rozana partners with Hadassah Hospital, Jerusalem, to undertake the corrective surgeries associated with the issue of ambiguous genitalia (DSD).
Dr Guy Hidas, Head of Pediatric Urology at Hadassah (pictured below), sees an average of 20 cases each year. Approximately 30% of these cases emanate from Israel’s orthodox Jewish community while the remaining 70% are Palestinian patients. About half require corrective surgery.
The Palestinian community is characterised by high rates of marriage between close biological kin, with 44% of all registered marriages between blood relations and nearly one quarter of total marriages between first cousins. To a lesser degree, this social phenomenon is also seen in ultra-orthodox Jewish communities in Israel. The marriage of first cousins creates a one in eight chance of their offspring being born with a serious genetic disorder.
One of the most medically and socially complex of these genetic disorders in the Palestinian population (and Israel’s ultra-orthodox Jewish population) is ambiguous genitalia – a disorder of sexual development (DSD).
Children with DSD are subject to gender dysphoria – a condition whereby the dissatisfaction and anxiety they experience due to their body not reflecting their gender leads to severe psychological distress, anxiety, and depression. Parents too are subject to stress. In addition to concerns over their child’s future prospects for marriage and having children, there is fear that if the child’s condition becomes known outside of the family. It can threaten not just the child’s marriage prospects – but also that of any siblings. Consequently, children born with ambiguous genitalia are often hidden away – to live in isolation and shame.
In Western or more developed countries, doctors typically identify and then operate to correct disorders of sex differentiation at birth. Ideally, medical experts would aim to perform any gender-reassignment surgery before the child develops gender awareness. Generally believed to begin from the age of two. But in Palestine, such birth defects can go undetected for years, resulting in affected patients from infancy to adulthood.
Access to quality healthcare for DSD treatment in Palestine is problematic. A lack of experience in this highly sophisticated type of surgery often leads to sub-optimal outcomes.
Pediatric Urologist Dr Hidas comments,
“This kind of surgery is highly complicated, and in a global context, quite rare. We have gained expertise in this area because we see an unusually high number of cases.”
Dr Guy Hidas, Head of Pediatric Urology at Hadassah Hospital.