Gender Perceptions in Delivering Sexual and Reproductive Health Services in Sudan
One usual morning in 1987, I was preparing a list of patients for surgery at the Urology Department of Khartoum Teaching Hospital (KTH), where I was doing my rotation as an intern. A small scribbled note in the list file said, "H.A.: for orchidectomy (removal of the testicles) before stilbestrol (hormone given to enlarge the breasts)." This was the only information given by the Internal Medicine Department regarding why they were sending us the patient known as H.A. What immediately struck me was that H.A.'s first name was a female name, and I started wondering what brought testicles into the subject. After a long argument, I succeeded in convincing the surgeon in charge of my unit to allow me to investigate the case first.
I found H.A. in the Internal Medicine ward and thoroughly reviewed the patient's well-investigated hospital file. H.A. was 15 years old, brought up by a family of poor farmers from Sudan's White Nile province, complaining about H.A.'s failure of breast development, delayed menstruation and voice hoarseness. H.A. was wearing a Sudanese sari (toab), and the patient, the file and the family all perceived H.A. as female, probably facing minor medical problems. My thorough examination of H.A. and the file, however, indicated that H.A. was, in fact, biologically male. The barrage of investigations (including H.A.'s chromosomal pattern) had ruled out any degree of hermaphroditism or medical intersex syndromes. As it turned out, when H.A. was still an infant, a midwife in the White Nile province had performed female genital mutilation (FGM, affecting over 90 percent of Sudanese women). The midwife mistook H.A. for a girl simply because the testicles had not yet descended (which happens frequently), and the urethral opening was located closer to the base than to the tip of the penis (hypospadia). The uneducated family then continued to raise H.A. as a girl, until H.A. failed to develop any female sexual characteristics after puberty, at which point they sought medical help.
After further insistence, my supervising surgeon allowed me to obtain a second opinion by presenting H.A. as a case during the citywide fortnightly Clinical Pathology Conference. The conference participants diligently debated the medical and psychosocial issues, elucidated case management options and then weighed the relative ethical implications and dimensions. But after about two hours in the conference, I felt they revealed more about their ideological and moral stances on sexual rights than about the best interests of our patient. In any case, they concluded that our unit should investigate and clarify two options to present to H.A.'s family. One option was to surgically refashion the mutilated vagina to allow basic intercourse, remove the testicles, and thus allow H.A. to continue developing socially as a woman, but knowing well that H.A. will never reproduce (which in essence becomes a guarantee of lifelong stigma, as it is for any woman in a country such as Sudan). The second option was to first take a small testicular biopsy to determine how viable sperm production may still be, break the news about H.A. being originally and still biologically male, and assist the family by organizing an immense amount of psychosocial support to help H.A. and family adapt to a situation of suddenly being announced as a boy, with all its psychological, sociocultural and probably economic and legal implications.
Our unit was thus asked to first just do the biopsy that would better clarify how viable H.A might be as a man if the male option were chosen by the family, and we were asked to report back to the next conference, held two weeks later.
Instead, what happened next was one of the most severe blows to my budding sense of pride. Fresh from medical school, I thought that I was now part of a humane profession whose respectability among the underprivileged majority in Sudan compelled us to assume a commensurate or higher burden of responsibility, diligence and reciprocal respect for patients' rights when people put their lives and fates in our hands every day. During a break in the Outpatient Casualty Department, I entered the operating theater of the urology unit on the day H.A. was meant to have the biopsy. Peering at me with eyes devoid of any sense of wrongdoing, my supervising surgeon almost flippantly told me, "Akram, guess what? I decided we'll just chop off the testicles and send her to Medicine for the stilbestrol. No need for headaches. It is already done." I remember standing speechless for several minutes, before turning around and leaving the room with tears running down my face. Later I informed him that, although as an intern I had no authority over his decisions on patients treated by the unit he ran, I would testify any day against him in court should H.A.'s family's sue him.
Struggling to find any glimmer of hope, morality, humanity and intellectual sophistication among my mentors, I still recall the young nephrologist who silenced Sudan's senior-most urologist at that time when the latter took only two seconds after my presentation to exclaim "chop off the testicles and give her stilbestrol." I also remember the other urologists who clamored with good will to offer subsidizing the surgery and travel costs for H.A. and family to go to London, where the male option could be better performed if that is what the family chose. One senior urologist even suggested that he bring an enlightened cleric to advise the next conference on the religious implications he suspected would be relevant for the family to know, as H.A. would have a massive share of inheritance from the father if deemed male, rather than if considered female, according to Islamic law.
Reflecting back on my bitterness about being powerless to do any more at that time, I try to make sense of this profession by analyzing the views of the senior urologists and nephrologists at the conference. Though depressing, their views were consistent with and mirrored the ideological views and stances they espoused throughout their medical and subsequent political careers. In fact, the surgeon who hastily recommended "chopping off the testicles" (among other offensive and gender-biased statements he made during the debate) went on to head one of Sudan's universities in the early 1990s. Moreover, some of the others who shared this view on H.A. during the conference have since gone on to control the medical profession in today's Sudan with ideological views and actions so regressive and oppressive that some have recently established and/or defended the creation of a clinic to actually perform FGM in Khartoum.
In conclusion, H.A.'s misfortunes were compounded twofold: first, being born in a country where poverty, illiteracy and abuse of sexual/reproductive rights are so pervasive, and second, coming under the care of certain unscrupulous medical professionals who readily violate their oath by neglecting their duty to uphold sexual, reproductive, patient and human rights.
The lack of mechanisms for peer accountability, enforcing patient/consumer rights, effective legal recourse, as well as a deeply disempowered population will unfortunately guarantee that such doctors will continue to do harm with impunity.
Akram Ali Eltom has worked in Sudan's Ministry of Health, as well as a number of international development organizations including UNDP, Save the Children, USAID, UNICEF and IOM. Since 2004, he has worked for WHO as HIV/AIDS Team Leader, first in Russia and currently in Ethiopia. He was born in Omdurman City (Sudan) and spent his childhood in Ethiopia, Italy and Sudan.
