Dilem­mas for women, and doc­tors, in ad­dress­ing the ef­fects of FGM

Toronto Star - - FRONT PAGE - MICHELE HENRY STAFF RE­PORTER

On­tario doc­tors grap­pling with how to treat women who as young girls were sub­jected to fe­male gen­i­tal mu­ti­la­tion are some­times asked to re­verse part of the pro­ce­dure done a world away, pro­vin­cial records show.

The process — sur­gi­cally re­open­ing the vagina — is called “re­pair of in­fibu­la­tions,” ac­cord­ing to the Ministry of Health and Long-Term Care.

In­fibu­la­tion is the clin­i­cal term for the sur­gi­cal nar­row­ing of the vagina that is one of sev­eral types of fe­male gen­i­tal mu­ti­la­tion (FGM) per­formed in 29 coun­tries around the world, and some­times seen as a rite of pas­sage into wom­an­hood or a con­di­tion of mar­riage.

Billing records sub­mit­ted by On­tario doc­tors show the re­ver­sal surgery has been per­formed 308 times in the past seven years in On­tario, though it may be done more of­ten and billed un­der a dif­fer­ent code.

While re­pair of in­fibu­la­tion opens the vagina, there is no current pro­ce­dure that re­places re­moved tis­sue.

Fe­male gen­i­tal mu­ti­la­tion refers to four dif­fer­ent pro­ce­dures done in coun­tries in­clud­ing So­ma­lia, Su­dan, Egypt and parts of South­east Asia, usu­ally by a non­med­i­cal prac­ti­tioner.

This prac­tice “dam­ages the woman phys­i­cally and emo­tion­ally,” says Dr. Joseph Daly, a gy­ne­col­o­gist at St. Joseph’s Health Cen­tre who has per­formed the re­ver­sal pro­ce­dure nu­mer­ous times.

“Women suf­fer need­lessly from this pro­ce­dure and there’s no clin­i­cal value in the pro­ce­dure,” said Daly.

Type 1 FGM is re­moval of the cli­toris; type 2 is ex­ci­sion of the cli­toris and labia mi­nora with or with­out the labia ma­jora; and type 3, also called in­fibu­la­tion, is when the labia are cut and repo­si­tioned to seal shut the vagina, leav­ing only a small open­ing for uri­na­tion and men­strual flow.

Un­der the On­tario Health In­sur­ance Plan, doc­tors are paid $115 per re­ver­sal op­er­a­tion, called “de­in­fibu­la­tion.”

A Toronto woman in her mid-30s was sub­jected to fe­male gen­i­tal mu­ti­la­tion in So­ma­lia when she was 4 years old, sev­eral years be­fore she came to Canada with her fam­ily. She told her story to the Star on the con­di­tion that she not be iden­ti­fied.

She doesn’t re­call hav­ing the pro­ce­dure, but knows that it was done with anes­thetic by a fe­male “prac­ti­tioner,” a friend of the fam­ily who was not a med­i­cal doc­tor but had ex­pe­ri­ence do­ing this to girls.

Her mother told her she had to be sewn up twice. Girls who are in­fibu­lated have to stay in bed for weeks with their legs bound to al­low the wounds to heal and pre­vent them from run­ning around and rip­ping the stitches, she said. They’re taken to uri­nate and held over pot­ties be­cause they can’t squat at the Africanstyle toi­lets.

But she was ac­tive and re­fused to sit still, so her stitches came loose.

“The mem­o­ries aren’t clear, but I know the se­cond time was more trau­matic,” she said. “I couldn’t use the bath­room my­self. Pee­ing hurt. I re­mem­ber be­ing frus­trated be­cause I wasn’t able to be mo­bile any­more.”

Grow­ing up in Toronto, thou­sands of miles away from her na­tive home, she never thought about the fact that she had been sub­jected to the pro­ce­dure, she said. Since most of her fe­male peers also had it done be­fore im­mi­grat­ing to Canada, it wasn’t shame­ful or taboo in her so­cial cir­cle.

Only Cana­dian physi­cians ex­pressed alarm. “When they ex­am­ined me they would say, ‘What’s wrong with this child?’ ” she said. “A lot of doc­tors weren’t aware of it. They kept ques­tion­ing my fam­ily.”

Still, she said it wasn’t an is­sue as she be­came a young adult and be­gan to date. She was a de­vout Mus­lim, and sex­ual ac­tiv­ity was off-lim­its.

But since she was a teenager, she knew she would have the surgery to open her up be­fore con­sum­mat­ing her mar­riage.

With­out a de­in­fibu­la­tion — or de­fibu­la­tion, as it is also some­times called — to cre­ate a larger vagi­nal open­ing, in­ter­course could be im­pos­si­ble, or at least very painful.

“I didn’t want to feel the pain,” she said. “So why not take the eas­i­est and least painful route?

Af­ter she got en­gaged to her hus­band, she thought more se­ri­ously about how she wanted to han­dle sex, she said. Her fi­ancé, raised in the western world, was on board with what­ever she de­cided.

Some of her friends, also newly en­gaged or mar­ried, de­cided against hav­ing the pro­ce­dure be­fore they had sex for the first time.

“It de­pends on the girl,” she said. “It de­pends on her point of view. And it de­pends on how the hus­band views it and feels about it.”

She ap­proached her fam­ily doc­tor, a fe­male physi­cian who worked with many So­mali women. Her doc­tor didn’t re­act with alarm, but gave her a re­fer­ral to a spe­cial­ist, a lo­cal ob­ste­tri­cian-gy­ne­col­o­gist.

He walked her through the surgery and al­le­vi­ated her fears.

Cut and sewn up so young, she didn’t know what anatomic struc­tures she was miss­ing and what body parts needed to be — or even could be — re­con­structed, she said.

“Would this surgery take my vir­gin­ity? What can’t I have back and how much dif­fer­ence will that make in my sex­ual re­la­tion­ship?”

Doc­tors who per­form the re­ver­sal surgery walk a tightrope fraught with cul­tural is­sues.

Daly says it helps that he has con­nec­tions in the So­mali com­mu­nity, and in oth­ers whose cul­tures may prac­tise fe­male gen­i­tal cut­ting. Daly said the colour of his skin — he is Black — has been an ad­van­tage in mak­ing women from cer­tain eth­nic­i­ties feel com­fort­able to talk about the is­sue.

“There are not many of us around,” he said of Black gy­ne­col­o­gists in the GTA. “Pa­tients see me be­cause of this.”

Re­cently, though, he said he hasn’t per­formed the surgery as of­ten as he would pre­dict for a pop­u­la­tion, es­pe­cially in the GTA, that is home to many women em­i­grat­ing from coun­tries where fe­male gen­i­tal cut­ting is still the norm, or at least a com­mon prac­tice.

The Health Ministry data shows that, on av­er­age in On­tario, only about 40 re­pairs of in­fibu­la­tions are per­formed each year.

Rachel Spitzer, an OB/GYN at Mount Si­nai Hos­pi­tal and as­so­ciate pro­fes­sor at the Univer­sity of Toronto, said that the num­bers seem “sur- pris­ingly low.”

She’s not aware of any in­for­ma­tion avail­able that ex­plains the mo­ti­va­tions for women who seek — or do not seek — this type of surgery or iden­tify those at risk.

“We lack in­for­ma­tion on the preva­lence of women who ar­rive who have that done,” she said. “There’s no data to clar­ify.”

Spitzer per­forms a hand­ful of re­pairs each year, she said, some­times dur­ing child­birth in or­der to avoid an epi­siotomy or ex­ten­sive tear­ing.

Other physi­cians re­fer these women to Spitzer, she said, be­cause they aren’t fa­mil­iar with the var­i­ous types of fe­male gen­i­tal cut­ting or don’t know how to of­fer treat­ment. Fifty per cent of those re­fer­rals, Spitzer said, are women who have been in­fibu­lated and are can­di­dates for surgery.

The other half is a mix of women with dif­fer­ent types of gen­i­tal cut­ting, or scar­ring on the vagina that doesn’t fit the clas­si­fi­ca­tions, she said.

Re­fer­ring physi­cians may be un­able to do a Pap smear, a rou­tine screen­ing test for cer­vi­cal can­cer, Spitzer said. Or they may have com­pli­ca­tions, com­plain­ing of urine drib­bling, dif­fi­culty man­ag­ing their pe­ri­ods, pain dur­ing in­ter­course or trou­ble ex­pe­ri­enc­ing plea­sure dur­ing sex.

With ev­ery pa­tient, Spitzer said she ex­plains the lim­i­ta­tions of surgery. She can make an open­ing large enough for a baby to get out, and make sex more com­fort­able, she said. She’ll sew tiny stitches to re­pair the dam­aged sides of the labia that were sewn shut. But there are cur­rently no pro­ce­dures Spitzer is aware of in Canada that can re­place lost tis­sue, she said.

For all the women she treats, Spitzer said she tries to teach them about their bod­ies. “We talk about anatomy,” she said. “Some­times we use a mir­ror to do that.”

Crista John­son-Ag­bakwu, an ob­ste­tri­cian-gy­ne­col­o­gist and di­rec­tor of the Refugee Women’s Health Clinic in Phoenix, Ariz., and a rec­og­nized ex­pert on fe­male gen­i­tal cut­ting, said that a small num­ber of pa­tients don’t want to be opened to give birth be­cause they are “staunchly proud” and be­lieve it makes them beautiful.

Oth­ers, af­ter a de­in­fibu­la­tion dur­ing child­birth, are “dis­tressed” by the new ap­pear­ance of their anatomy — they might think their labia are too long, for in­stance — and ask to be closed up.

John­son-Ag­bakwu will not sew them back up, she said. But in those cases, she will do what she can to make the cli­toral area look ac­cept­able to them.

It is a Crim­i­nal Code of­fence to per­form fe­male cir­cum­ci­sion in Canada, in­clud­ing to re­in­fibu­late a woman — mean­ing to sew her back up.

A 38-year-old woman, who lives just out­side Toronto, did not have the surgery when she got mar­ried.

She was sub­jected to FGM at the age of 7 in Su­dan be­fore im­mi­grat­ing to Canada in 2006, and she said she was only par­tially sewn up, leav­ing her a larger open­ing.

Nonethe­less, she said, sex was painful at the begin­ning.

Back home in Su­dan, she said, “closed-minded men” would brag about how many days it took to pen­e­trate their wives, who were of­ten stitched mostly shut. “They think if they open them­selves they do an hon­our job,” she said. “They think: re­ally good for them!”

For the mid-30s Toronto woman who had the surgery, she said she had pain in the days fol­low­ing the re­pair, a roughly 45-minute pro­ce­dure. But she didn’t ex­pe­ri­ence the “dras­tic, body-chang­ing” event she ex­pected.

For a time, she avoided pub­lic bath­rooms be­cause she thought her urine flow sounded dif­fer­ent and strange, but she is happy with her new ap­pear­ance. She knows she will never look like the av­er­age woman — and that suits her just fine.

“What’s done is done,” she said. “And I am happy with what I have. I am able to have a nor­mal sex­ual life.”

Af­ter she re­cently had her first child, her own mother apol­o­gized for hav­ing sub­jected her to FGM. It came up dur­ing a con­ver­sa­tion about how other So­ma­lis send their chil­dren back to Africa to have the pro­ce­dure.

She said nowa­days, par­ents aren’t do­ing the ex­treme ver­sion, like what was done to her. They’re do­ing more of a “nick or pin­prick.” She doesn’t ob­ject to the rit­ual be­ing done on girls for re­li­gious rea­sons if it’s only to draw a bit of blood.

But she would never sub­ject her daugh­ters to FGM.

“Women suf­fer need­lessly from this pro­ce­dure and there’s no clin­i­cal value in the pro­ce­dure.” DR. JOSEPH DALY ST. JOSEPH’S HEALTH CEN­TRE

Mount Si­nai OB/GYN Rachel Spitzer per­forms a hand­ful of surg­eries each year to re­pair dam­age caused by fe­male gen­i­tal mu­ti­la­tion.

RICHARD LAUT­ENS/TORONTO STAR

Dr. Joseph Daly says fe­male gen­i­tal mu­ti­la­tion “dam­ages the woman phys­i­cally and emo­tion­ally.”

RICK MADONIK/TORONTO STAR

Dr. Rachel Spitzer, an OB/GYN and Univer­sity of Toronto as­so­ciate pro­fes­sor, tries to teach her pa­tients about their bod­ies, us­ing a mir­ror.

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