TREATING DISORDERS OF SEX DEVELOPMENT | PROJECT ROZANA

Dr Guy Hidas, Director of Paediatric Urology at Hadassah Hospital.

TREATING DISORDERS OF SEX DEVELOPMENT

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 seen within the Palestinian population (and Israel’s ultra-orthodox Jewish population) is ambiguous genitalia – a disorder of sexual development (DSD). Babies born with this condition may have characteristics of both sexes or external genitals which are severely malformed or cannot be clearly defined as male or female. In some cases, the external sex organs may not match the internal sex organs or genetic sex. Apart from genital abnormalities, children suffering from this disorder may also experience:

  • Malformation or complications of the urinary tract
  • Infertility
  • Abnormal physical development during puberty
  • Increased risk of certain cancers
  • Gender dysphoria

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 psychological distress. 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 may threaten not just the child’s marriage prospects – but also that of any siblings. Consequently, children born with ambiguous genitalia are often hidden away – forced 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 – which is generally believed to begin from the age of two. But in Palestine which generally has a lower standard of medical care, such birth defects can go undetected for years, resulting in a cohort of patients that can range in age from infancy to adulthood.

Access to quality healthcare in Palestine is problematic. In 2018 the UNRWA identified a severe lack of trained mental health care workers, psychologists and paediatric surgeons as just some of the many factors jeopardising the delivery of adequate health care to Palestinian children. For disorders of sex development, where corrective surgery is attempted by surgeons within the Palestinian health system or by visiting NGO medical missions, a lack of experience in this highly sophisticated type of surgery often leads to sub-optimal outcomes requiring multiple surgical procedures to correct the corrective surgery.

Thus, given the complex nature of the disorder known as ambiguous genitalia, treatment by Hadassah Hospital’s pediatric urology surgeons is the best hope for affected children to have the possibility of a normal life. Dr Guy Hidas, the Director of Paediatric Urology at Hadassah Hospital has become an expert in the field of ambiguous gender and genital reconstructive surgery. Dr Hidas sees an average of 20 cases of ambiguous genitalia per year. Approximately 30% of these cases emanate from Israel’s orthodox Jewish community while the remaining 70% are Palestinian patients. Dr Hidas estimates that approximately half of all patients that present with ambiguous genitalia require corrective surgery. As he 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.”

Project Rozana partners with Dr Hidas to undertake the corrective surgeries associated with the issue of ambiguous genitalia at a cost of $15,000 per surgery; it is anticipated that Dr Hidas and his team will undertake 10 such procedures per annum.

CONTACT

مشروع روزانا

PROJECT ROZANA

פרויקט רוזנה

+61 3 9272 5600

PROJECT ROZANA

PO Box 2400, Caulfield Junction, Vic 3161 Australia

CONTACT

+61 3 9272 5600

1800 hadassah

PROJECT ROZANA

c/o Hadassah Australia, PO Box 2400, Caulfield, Vic 3161 Australia