Uganda par­ents seek gen­i­tal surgery for ‘in­ter­sex’ ba­bies

Kuwait Times - - HEALTH & SCIENCE -

KAMPALA: Af­ter their baby was born in a pri­vate clinic near the Ugan­dan cap­i­tal, par­ents Jus­tine Nakato and Stephen Mbazi­ira Dembe were frus­trated their nurses and doc­tors would not show them their baby or tell them its gen­der. They kept ask­ing the nurse to tell them what was go­ing on. She said the baby was do­ing well and they would tell them the sex soon. When the mother was dis­charged, the hospi­tal staff handed over the baby wrapped up in blan­kets and warned them not to ex­pose the in­fant’s skin to the cold un­til they got home. There the cou­ple dis­cov­ered their baby had both a vag­ina and a pe­nis.

“At first we were shocked, we went to many physi­cians to try to find out what we should do,” Dembe told the Thom­son Reuters Foun­da­tion at his home in Nsam­bya, a sub­urb of Kampala. “He started pass­ing urine through the pe­nis. Then we de­cided to give him male names, Ti­mothy Ziwa.” Ti­mothy is now 10 months old and his par­ents are try­ing to raise funds to carry out gen­i­tal re­shap­ing surgery, a con­tro­ver­sial process that in­volves pro­ce­dures in­tended to make gen­i­talia more like those of ei­ther typ­i­cal males or fe­males.

They are not alone. Lo­cal ra­dio sta­tions in Uganda buzz with ap­peals seek­ing donors to help fund gen­i­tal re­shap­ing surgery abroad. One, played reg­u­larly on Metro FM, tells a story of a poor child born with am­bigu­ous gen­i­talia and pleads for do­na­tions. But an in­ter­sex rights group says op­er­a­tions car­ried out in Uganda are un­nec­es­sary and some­times botched, and ad­vises par­ents to wait un­til af­ter chil­dren have reached pu­berty be­fore mak­ing any de­ci­sions on surgery, whether at home or over­seas.

Tamale Ssali, a con­sul­tant ob­ste­tri­cian and gy­nae­col­o­gist in Kampala who has ex­am­ined Ti­mothy, said the child’s par­ents would need around $50,000 to pay for the surgery in Bri­tain as Uganda lacks the fa­cil­i­ties safely un­der­take such com­plex surg­eries. “The baby was born with a con­di­tion called am­bigu­ous gen­i­talia. There is a small vag­ina but no pos­si­ble uterus and a well-de­vel­oped pe­nis but no scro­tum,” Ssali told the Thom­son Reuters Foun­da­tion.

Ac­cord­ing to an Au­gust 2015 re­port by the Sup­port Ini­tia­tive for Peo­ple with Con­gen­i­tal Dis­or­ders (SIPD), a Ugan­dan in­ter­sex rights or­ga­ni­za­tion, at least three chil­dren are born with an in­ter­sex or “dif­fer­ence of sex­ual de­vel­op­ment” con­di­tion ev­ery week in Mu­lago Na­tional Re­fer­ral Hospi­tal, the big­gest hospi­tal in Uganda. Giv­ing birth to an in­ter­sex child can come as a shock to par­ents, and many opt for gen­i­tal re­shap­ing surgery, ac­cord­ing to Ssali.

In its sur­vey of 25 dis­tricts in Uganda, the first of its kind, SIPD recorded 48 cases of such surg­eries be­ing per­formed. Julius Kagwa, ex­ec­u­tive di­rec­tor of SIPD, whose book “From Juliet to Julius” de­scribes chang­ing gen­der as an adult, said Uganda does not have a lab­o­ra­tory per­form­ing chro­mo­so­mal tests for chil­dren to help de­ter­mine sex, and gen­i­tal re­shap­ing surg­eries are of­ten flawed. “A few surg­eries have been at­tempted to al­ter am­bigu­ous gen­i­talia in in­fancy but most of these have been un­suc­cess­ful and the in­ter­sex chil­dren have ended up de­vel­op­ing phys­i­cal char­ac­ter­is­tics of the op­po­site sex at pu­berty,” he said.

Bi­o­log­i­cal Mile­stones

Most in­ter­sex chil­dren in Uganda are as­signed fe­male at birth and raised to iden­tify as women, ac­cord­ing to the SIPD re­port. But for many in­ter­sex women, fe­male bi­o­log­i­cal mile­stones, such as menstruation and breast de­vel­op­ment do not nec­es­sar­ily fol­low. In­stead, some are faced with changes as­so­ci­ated with male pu­berty, such as beard growth, body hair and voice deep­en­ing.

These de­vel­op­ments can bring ridicule and stigma, which can lead to sui­cide at­tempts and higher rates of school drop-out, ac­cord­ing to SIPD. “SIPD ad­vo­cates for the ‘best guess’ non­sur­gi­cal ap­proach where an in­ter­sex child should be raised in the best-suited gen­der, with­out ir­re­versible sur­gi­cal in­ter­ven­tion, un­til they can be ac­tive par­tic­i­pants in the de­ci­sion,” said Kagwe.

Sam Ly­omoki, a doc­tor and mem­ber of the Ugan­dan par­lia­ment, said par­lia­ment is­sued guide­lines in 2015 to the Min­istry of Health ad­vis­ing against sur­gi­cal in­ter­ven­tion for in­ter­sex in­fants. “The guide­lines stress coun­selling for the par­ents, and there are coun­sel­lors trained to do that. Surgery can only be done when the child is old enough and has shown more fea­tures of ei­ther sex or the child can de­cide for him/her­self,” he told the Thom­son Reuters Foun­da­tion.

In­ter­sex peo­ple who have un­der­gone early gen­i­tal re­shap­ing surg­eries have com­plained of prob­lems like loss of sex­ual sen­sa­tion. Betty, who uses a pseu­do­nym to pro­tect her iden­tity, told the Thom­son Reuters Foun­da­tion from her home in Kampala that she un­der­went gen­i­tal re­shap­ing surgery when she was a baby. She went on to have a child, but has no cli­toral sen­sa­tion. “I think what the doc­tors and my par­ents agreed to cut out was just an elon­gated cli­toris but not a pe­nis,” she said.

Malta was the first coun­try to pro­hibit in­vol­un­tary or co­erced mod­i­fi­ca­tions to sex char­ac­ter­is­tics. The Coun­cil of Europe has also rec­og­nized a right for in­ter­sex per­sons to not un­dergo sex re­as­sign­ment treat­ment against their will. Superstition and shame is an­other fac­tor fac­ing in­ter­sex chil­dren in Uganda. In­ter­sex chil­dren are of­ten hid­den as their fam­i­lies con­sult tra­di­tional heal­ers for an­swers. SIPD re­ported cases in which moth­ers con­spired with witch­doc­tors to have their in­ter­sex chil­dren killed in cleans­ing rit­u­als be­cause they were be­lieved to be cursed. Moth­ers also aban­doned their in­ter­sex chil­dren in toi­lets or forests, and oth­ers sub­jected them to harm­ful mu­ti­la­tions to re­shape their gen­i­talia, ac­cord­ing to the re­port.

Joseph Mu­sisi, a tra­di­tional healer based in the Makindye sub­urb of Kampala, said the mu­ti­la­tion of in­ter­sex chil­dren is an out­dated prac­tice and said his peers prac­tice ther­a­pies within the con­fines of the law. “Not ful­fill­ing fam­ily obli­ga­tions and an­ger­ing one’s an­ces­tors could be a rea­son one gets an in­ter­sex child. This can be rec­ti­fied if a tra­di­tional healer speaks to the an­ces­tral spir­its, iden­ti­fies their de­mands, and has them ful­filled,” he said. In­ter­sex peo­ple have also chal­lenged laws in Uganda, in­clud­ing the Reg­is­tra­tion of Births and Deaths Act, which has a pro­vi­sion that re­stricts peo­ple above 21 years of age from chang­ing their sex de­tails in the Na­tional Births Regis­ter.

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