PROVIDING A LIFELINE TO A STRUGGLING FAMILY
Puberty is a complex time of transition – physically and emotionally. This complexity is compounded if the changes don’t fit a normal gender pattern. They are compounded even further if the gender development is happening in a society that is not geared to accept or address them.
For Asma* a 15 year old Palestinian girl living on the West Bank, her puberty was definitely not running to an expected script. Her voice was deepening and she had excessive body hair. The situation was a source of extreme embarrassment and anxiety, for her and her parents. This was the situation presented to Project Rozana’s Clinical Advisory Committee in Israel when Asma’s case was referred to it recently.
Asma’s family doctor had taken her case to a Palestinian Authority (PA) endocrinologist who had trained at Hadassah Hospital under its Head of Paediatric Endocrinology, Professor David Zangen. Tests subsequently revealed that Asma was born with a rare genotype androgen insensitivity syndrome. In effect she is genetically male and an ultrasound revealed that she had testicles in her abdominal cavity.
Disorders of Sexual Differentiation (DSD) are misunderstood in Palestinian society, so its management is a huge challenge from a medical, surgical and psychological standpoint.
Significantly for Asma, in 2014 Hadassah created a multidisciplinary DSD team comprising specialists from disciplines involved in gender identity, including a paediatric urologist, gynaecologist, paediatric endocrinologist, genetic specialist and a child psychologist. The team was immediately recalled to consider Asma’s situation.
Compounding any decision to act is the lack of funding from the PA for procedures like this. The family also has to contend with the shame and isolation that can result if their situation is revealed publicly. So they chose to seek support independently of the PA. Without a referral from the PA Health Ministry the procedure is not covered if undertaken in an Israeli hospital. Ron Finkel AM the Chair of Project Rozana said:
Difficult situations like this are precisely the mission of Project Rozana. We provide support for treatment in Israeli hospitals for Palestinian paediatric patients in cases where PA funding is not available. We understood that whatever the DSD team recommended would determine Asma’s gender identity for the rest of her life.
As soon as we were approached by Dr Guy Hidash, a senior paediatric urologist at Hadassah and member of the DSD team, we referred the case to our clinical advisory committee and once the family decided on surgical intervention we considered it a privilege to provide the necessary funds.
Fortunately for Asma and her family, the DSD team donated their time and Hadassah was able to absorb many of the costs for what would otherwise have been extremely expensive surgery.
Project Rozana was able to meet the shortfall of US$5,000.
As a result of the surgery, the testicles were removed and Asma was assured of continuing her life as a woman, albeit without a uterus.
Asma’s father, Youseff* said:
We don’t have enough words to thank the team. When you meet doctors like these at Hadassah, they become a family. They did something very special for us. We also appreciate their absolute discretion. Everyone should know that if they encounter such a serious problem, Hadassah has someone to take care of them.
Although this case is rare, in the last three years Hadassah has treated more than 20 boys and girls with a variety of complex conditions, most of which require surgical intervention.
The DSD team at Hadassah is hoping to treat up to 10 young Palestinian patients a year particularly as gender differentiation and intersex issues are more common in the Palestinian community due to consanguineous (first cousin) marriages. This is something that Project Rozana is keen to support, so as each situation presents itself, we will consider it on its merits.
*Note, the names have been changed to protect the family’s identity.