Trying to Rebuild Women's Bodies After Female 'Circumcision'

About 30 miles northwest from Syracuse, New York is a small town called Fulton. It averages about 15 feet of snow in the winter and stays pleasantly warm in the summer. Fulton is home to approximately 13,000 people, has six public schools, no hospitals, and one doctor that performs free female genital mutilation (FGM) reconstructive surgery.

Getting to this town is no easy task. From New York City, you can take a train or a bus to Syracuse and then catch one of six buses that runs on weekdays to Fulton. The entire trip comes in at about six hours of travel.

Fadima Ali—who asked that her name to be changed to avoid identification—is a 26-year-old woman from Brooklyn by way of Bamako, Mali. She is a single nursing student who works and studies six days a week. Last year, after nearly three years of back and forth, she decided it was finally time for her to make a trip to Fulton. Rather than deal with six hours of land travel, she flew to Syracuse and took a cab to Fulton. It was a bit expensive but she had been saving for this trip for a while.

Ali is a tall woman with a dark complexion. Her saucer-large eyes move around slowly, taking in the environment around her. Her already-soft voice often drops to a whisper. Though her demeanor is meek, her life hasn’t been. She left her parent’s conservative home and the sexually repressive environment of Mali 10 years ago. Where she comes from, women don’t see doctors for the reason that she is about to on this visit to Fulton.

It was a frigid morning in December 2013 when Ali landed in Syracuse. The weather had her on edge. A forecasted snowstorm threatened flight cancellations. After years of planning, the idea of weather ruining her trip was disheartening, she said. She was on a strict timeline and had to be back in Brooklyn before anyone noticed she was gone. “I have a friend coming because the hospital says I need someone there when they discharge me but I haven’t told her much about what I’m doing. Nobody else knows that I’m here,” she said. “Nobody can ever know,” she added, as an afterthought.

* * *

FGM, or female circumcision, is the practice of removing parts of a girl’s genitals. The procedure varies in extremity—from removing a thin slice of flesh to removing the entire labia minora and/or the labia majora. In these cases, the “cutter” leaves nothing but a pinhole sized opening surrounded with scar tissue. The most common type of FGM involves the removal of the clitoris. Girls subjected to this practice often grow up to face severe health complications with menstruation, sexual intercourse, pregnancy, and childbirth.

According to estimates from World Health Organization, between 100 and 140 million females worldwide live with the consequences of FGM. At least 30 million girls under the age of 15 are at risk. But what’s most surprising is that, according to The Centers for Disease Control and Prevention, nearly a quarter of a million of those girls live in the United States. Brigham and Women’s Hospital puts the figure at 228,000 with 38,000 in California, 26,000 in New York, and 19,000 in New Jersey.

While independent organizations all over the world have been working to raise awareness about female genital mutilation and decrease the number of women at risk, those already subjected to the procedure tend to have no recourse. They simply have to live with the results of what was done to them. This is where Dr. Harold Henning, a doctor practicing out of his home in Fulton, comes in. And it is because of him that Ali has made the journey upstate.

* * *

Harold J. Henning, 58, was born and raised in Wichita, Kansas. He is a graduate of the University of Kansas and has been practicing gynecology and embryology for more than three decades. He practiced out of Manhattan, Kansas until 2002, when his younger brother, Jimmy, was killed in an airplane crash that claimed two other lives. He then changed course. “I had embryos in the incubator so I couldn’t go to where he crashed and help out. I decided to stop what I was doing and reassessed my life,” he said. Deciding he needed a change, Henning began applying to various hospital positions and eventually landed a job as a gynecologist in Fulton.

Henning is an active man. He runs marathons, swims, and plays tennis. There are 12 plaques and various medical degrees and awards on his wall. There is also a map of New York State on his desk along with framed photos of his children and grandchildren.

Henning is a practicing OB/GYN and dedicates one day a week to working with survivors of female genital mutilation. His venture into clitoral restoration found unlikely inspiration in a controversial religion known as Raëlism. Claude Vorilhon, a French man now known as Raël, founded the religion in 1973 after an alleged encounter with extraterrestrials. The Raëlian messages, which are on their website, dictate their doctrine. They state that aliens called Elohim (a Hebrew term for God) put humans on Earth and sent down 40 prophets to spread a message that has somehow gotten lost in translation.

“The fact is, I’m Raëlian,” the doctor confessed, toying with a silver medallion hanging around his neck that he wears as a symbol of his faith. The symbol on his medallion, the Star of David superimposed with a swastika, has drawn controversy. Some call Raëlism a cult, but for Henning it’s a way of life. He says the religion has provided him with truths he never found in Catholicism (his family religion). “I know it sounds crazy,” he admits, laughing “But I have no reason to deny anything the messages say.”

Raëlism first piqued Henning’s interested in 2003 because of its work on cloning. Clonaid, an organization founded in 1997 by Raëlians on the basis of their belief that humans can achieve immortality (another tenet of Raëlism), attracted controversy in 2001. Dr. Brigitte Boisselier, Clonaid's research director, claimed to have successfully cloned humans but this claim remains unsubstantiated since Boisselier has yet to reveal the results. “I had heard someone talking about how the founder of the religion had an encounter [with aliens] in 1973 and I kinda just pooh-poohed it,” he said. But after reading about Clonaid, he wanted to know more.

“I read everything I could find on [Clonaid] and got in my car drove the four hours to Valcourt, Canada where they were having a convention and ended up staying the entire week,” said Henning. “I learned a lot about myself. My background is really religious but nothing I learned seemed to be answering my questions about religion and I was looking for the truth.”

Henning became hooked after the conference and started attending events hosted by Raëlians all over the United States. It was at one of these events in Las Vegas that he learned about female genital mutilation.

Vorilhon, aka Raël, had recently been in Ghana and learned how pervasive female genital mutilation is, explained Nadine Gary, a spokesperson for Clitoraid, a non-profit organization founded by Raël with the mission of empowering survivors of FGM. "Of course, organizations like the United Nations are doing a lot to prevent [FGM] from happening," Gary said. "But Raël said, ‘Nobody is doing something to help the women that have already been affected.’" After doing some research, Clitoraid discovered that a doctor based in France, Dr. Pierre Foldès, had developed a clitoral restoration surgery that he offered to survivors of FGM. “I said, ‘That sounds like something I could do. It doesn't sound that technically difficult,’” Henning said. And so, in 2009, Raël founded Clitoraid. Boisselier was named the president of the organization and Henning signed on as a volunteer.

Besides Henning, Clitoraid has one other volunteer providing free clitoral restoration surgery to women—Dr. Marci Bowers in California, Bowers is not Raëlian. “I had met and worked with some women who had been through female genital mutilation before and was appalled by it,” said Bowers. So when Gary approached her in 2007 to work with Clitoraid, she immediately agreed, despite the organization’s religious leanings. Nonetheless, the Raëlian aspect of Clitoraid can be distracting and hinder their mission, she said.

For the past few years, Clitoraid has been working on building a women’s hospital in Bobo, Burkina Faso. With support from Burkina Faso’s government and first lady, Chantal Compaoré, the hospital, called Kamkasso (woman’s house) but nicknamed the “pleasure hospital,” was slated to open in March 2014 with the mission of providing women clitoral restoration surgery. Two days before the scheduled opening, Compaoré withdrew her support and Clitoraid was informed that the hospital would not be allowed to open.

Henning, Bowers, and two anesthesiologists arrived in Burkina Faso after the opening was canceled and went ahead with scheduled clitoral restorations when a local doctor allowed them to use his facility. They performed 29 surgeries in three days but were forced to stop when the government in Burkina Faso revoked their medical licenses. The official statement from the Ministry of Health about the decision is that Clitoraid failed to fill out proper paperwork, but Henning and Bowers think it goes beyond that. They believe the Catholic Church was advocating against the hospital and Clitoraid because of its ties to Raëlism. “It’s nonsense that the paperwork was wrong,” said Bowers. “If the Catholic Church or a Jewish organization was doing this work they would receive accolades for embracing the cause but since it’s Raëlians, the response is hostile,” Bowers said.

Setbacks aside, Bowers plans to continue working with Clitoraid. “I don’t know what’s going on with the hospital, I know there’s been talk of obtaining legal representatives. But for me, I’m going to keep performing the surgeries. Not only does the surgery work in restoring sensation, [but] after my last visit to Africa I sensed that the tide has turned,” said Bowers. She believes that increased access to information and education has begun to make men and women change their minds about the practice. “I think I may see the end of this practice in my lifetime, which is something I never thought possible when I first got into this field in 2007.”

After signing on with Clitoraid in 2007, Bowers traveled to Paris to train under Dr. Foldès. She later went on to train Henning. Since then, Henning has performed nine surgeries for women in the United States. They came to him from all over: Tennessee, New York, Georgia, North Carolina, and Maryland.

Henning says that the surgery is only the first step in healing from female genital mutilation. “I always tell the women to see a sex therapist once they get home,” he said. Since most of these women were cut when they were young, feeling anything can be uncomfortable and confusing, and they can mistake stimulation for pain.

One of the women he performed a clitoral restoration surgery for had her procedure reversed. “She came here on a bus, had her surgery done, and went back on her own. She was so sensitive because I restored the shaft of the clitoris. It felt like pain to her,” said Henning. He thinks all she needed was sex therapy. He gave her numbing medicine but she didn’t have much support from friends or family. “It’s often the women that don’t have a support system that suffer.”

 Henning has had women scheduled for surgeries cancel because the people that were supposed to be supporting them backed out. "It’s tough," he said. "The ones that have worked out pretty good are the ones whose boyfriends or husbands have known what’s going on and they’re supportive.”

Located off Route 48, a 28-mile stretch of highway in Central New York, Henning's home and office looks like a classic American house. It has navy blue shutters and brown faded paneling across its length. A large ivy green oval sign sets his home apart from the others: Harold J. Henning, MD, it says in large white letters. He consults with patients at his home office and performs the clitoral surgery at the nearby Oswego Hospital. His services are free but patients have to pay for the surgical room at the hospital. It is a cost that could run anywhere from $500 to $3000. It is a frustrating situation but one that he has to work with, he said. He tells his patients up front what the cost for the surgical room may be and, together, they work on determining whether insurance (if they have any) will cover the cost or if they can afford to cover it themselves. Ali, who has health insurance through her nursing home employer, had no issue: the insurance company was ready to cover all the costs.

*  *  *

Ali arrived at Henning’s office six hours late. He was still waiting for her when she got there. Sitting in his small office, she continuously fiddled with the sleeves of her purple Ralph Lauren sweater, pulling the ends down to her knuckles.

"People come to America for a better life but mostly, I wanted freedom,” she said on her decision to move to the U.S. “Where I'm from you don't go out, it's all school and home. I wanted a different life." She worked for a few years after arriving in New York City and then enrolled in school to become a nurse, something she is still working towards.

Ali has the most common type of female genital mutilation, which the World Health Organization defines as Type II. That is, she has no clitoris. She thinks she was two years old when her parents had her “circumcised” in Mali. She spent most of her life thinking that her anatomy was normal. “I always knew I was circumcised since all girls [in Mali] are but I didn’t really know what that meant,” she said, glancing down at her feet.

It wasn’t until she was 22 and already living in the U.S. when she realized what it means, as a woman, to be “circumcised”. "I remember taking an English composition class and there was a lecture about other cultures. The professor started talking about female genital mutilation and showed a video about it. I felt this boom in my heart when I saw it,” she said, fluttering her hand in front of her chest to indicate the palpitation she felt. “That’s when I realized that circumcision is to remove the clitoris and understood that is what happened to me."

Mali is a West African nation. It has eight regions or what we would consider states whose borders go deep into the Sahara desert. Located near the Niger River, Bamako, where Ali is from, is one of its largest cities. Mali has a population of about 15 million people and a little over half are female. A UNICEF report estimates that 89 percent of those females have been subjected to female genital mutilation.

Ali was too young to recall her own cutting but does remember some of the cutting ceremonies that she witnessed in Mali, where the practice is illegal but still occurs. Her mother’s side of the family has a tradition of cutting girls before they turn 12. “On that day there’s a big ceremony, they dance, and all the little girls have the same hair styles, same clothes, and then [the cutters] circumcise them all. I remember my cousin was very excited about her party but she didn’t know what was going to happen.”

Female genital mutilation is an African cultural practice. Tribes that do practice it consider uncut women to be promiscuous and ridicule them, Ali said. And so, the practice is passed down from generation to generation, from mother to daughter. “My mother, she follows the rules. I know she wants something completely different for us but she doesn’t want to go outside of what is supposed to be,” Ali said. “Mothers in general, I think they worry about the daughter and who she is going to be because if she’s a wild girl, that’s going to show the bad in the family. The daughter might not be able to get married later even.”

The purpose of female genital mutilation is to keep a firm grasp on a woman's sexuality. In this case, it means squashing it before she can even consider becoming sexually active and bringing shame to the family. It is a conditioned thought that runs deep—one that even Ali can't seem to shed. “My friend [who isn't cut], I can see she’s wild," she said mentioning her friend's various boyfriends and likelihood of being sexually active.

Ali first learned about clitoral restoration surgery in the same classroom where she learned about the reality of FGM. “Someone in my class mentioned that there’s this surgery they do for women to fix it and I couldn’t wait to go home and get on the Internet to do research,” she said. It was then that she stumbled across Clitoraid. She first got in touch with the organization in 2011 but Bowers had not yet trained Henning at the time, so her only option was to travel to California. “I almost went but then I got scared, going all the way to California alone was going to be scary and costly. I cancelled my appointment.”

But she continued her research and even consulted with doctors in New York City. They were going to charge to up $5000 for the procedure.

Three years after initially contacting Clitoraid, Ali finally set up an appointment with Henning at the end of 2013. Going to upstate New York was a lot less intimidating than flying all the way to California, she said.

* * *

Foldès developed clitoral restoration surgery about 20 years ago. He published a paper about his work in The Lancet in 2012. Between 1998 and 2009 he performed the surgery formally known as clitoroplasty on nearly 3000 women, he wrote. Results on the long-term effects of the study may be unreliable though. Of the roughly 3000 women he performed the surgery on, only 866 of the women returned for a one-year follow-up examination. Most of those women reported an improvement of clitoral pleasure and no increase in pain, though some did report pain.

The surgery itself is fairly simple. As the science community has recently learned, the clitoris is much larger than the small accessible part. An unerect clitoris can be up to 9 centimeters long, meaning that most of the clitoris is actually within the body and inaccessible without surgery. So theoretically, underneath the scar tissue on a woman who has experienced female genital mutilation is more clitoris.

To restore part of the clitoris, the doctor opens up the scar tissue, brings some of the clitoris back up into position, and sews it in place. The recovery process for the surgery is long, painful, and arduous; it can take up to a few months for skin to grow on top of the newly restored clitoris leaving the woman very sensitive for some time. Foldès says he cannot guarantee orgasms from the restoration but it does have the potential to bring back some sensation.

Still, the surgery has not gained much traction in the U.S. The American Congress of Obstetricians and Gynecologists believes there is not enough research to support the surgery yet. The manual for women's health, published by the organization, states: “It is deceptive to give the impression that… any such procedures are accepted and routine surgical practices. Absence of data supporting the safety and efficacy of these procedures makes their recommendation untenable."

Nonetheless, the American Congress of Obstetricians and Gynecologists does encourage survivors of female genital mutilation to work with “a physician with special interest in pelvic or vaginal reconstructive surgery or a clinician practicing in an area of high prevalence of female genital cutting.” The main point is they want the doctors to inform any woman they perform clitoral restoration surgery on that it may not work.

Even though the surgery is not popular in the United States, it is legal and some doctors perform it. Foldès has trained about 11 surgeons worldwide on the procedure including Bowers. For two weeks out of the year she devotes time to performing the surgery for free. She has performed the surgery on about 85 patients bringing Clitoraid’s total in the United States to 94.

*  *  *

Back in Henning’s office, one of Ali’s first questions him is why he does what he does and in particular, why he does it for free.

"The reason is because you didn't ask for this. It was done to you. If I can help you and I charged you for it, then it would be like I'm making a profit off of your misfortune, which isn't right," he said leaning back in his chair. Ali listened to him intently, sitting upright, making sure to absorb everything he said.

As the consultation continued, Henning approached the topic of sexual pleasure and feeling. “I think I don’t feel the excitement other people feel,” Ali said, describing her lack of interest in sex.

“That’s because the ability to feel those things were taken away from you at a young age,” said Henning. He described the surgery to Ali and what she should expect to feel over the next few months. While she doesn’t need to come back to see him for follow-up appointments, she is required to see a doctor in Brooklyn and send Henning updates on her condition.     

“Once my surgery is over, I’m going to share information about [Clitoraid] on Facebook,” said Ali. Her logic is that casually posting a link to the organization’s website on her Facebook profile would draw interest but not incriminate her. No one talks about these things, she said,  but “all the women I know will secretly look into it.”

During Ali’s consultation with Henning, he explained to her the effects of the surgery. Ali, who had done extensive research on the possibility of the surgery not working or restoring sexual pleasure for her, nodded as he spoke. Henning pulled out photos of before and after photos of women to show her what she may look like after the surgery and Ali, leaned over inquisitively looking at the anatomy. She leaned back after looking at the photos and confidently proclaimed, “I don’t know what’s going to happen and how this is going to go but no matter what, I know I’m going to be happy.”

* * *

On the day of the surgery, Ali took a taxi to Oswego Hospital where Henning was already waiting for her. She was both excited and anxious she said. Excited about the possibilities of her new life post-operation, anxious because she had a confession to make and she was worried that because of it the surgery wouldn’t go as scheduled.

Henning recommends that patients come with a friend or a significant other. The hospital in Oswego requires a patient to be accompanied out. Ali had mentioned earlier that she had a friend to accompany her, but in reality, no one was coming. “I was told that the hospital requires patient’s to have an escort after surgery and I was worried that my surgery might be postponed. I truly wanted to keep it secret,” she admitted after the fact.

She was also worried about complications and what that would mean for her. “[My friends and family] didn’t know where I was or what I was doing, so if something went wrong I don’t know what would have happened,” she said describing her anxiety about the procedure.

After reassurances from Ali that she would have no trouble getting home on her own, Henning decided to go ahead with the scheduled surgery. It took a total of five hours and a few hours later when Ali opened her eyes, for the first time in about 24 years, she had a complete vagina.        

Henning tried to prepare Ali for the pain following the surgery. He talked to her again about the procedure and how long it takes to heal. He gave her a piece of paper with discharge instructions on it: Keep ice on your surgery side, 20 minutes on and 20 minutes off for the first 24 hours after the surgery. You may resume bathing after seven days. Place Vitamin A&D ointment or Neosporin along the incision lines for the next two weeks.         

Even with the instructions, Ali said she was unprepared for the pain. Three months later, she recounted the experience. “I couldn’t sleep for the first few nights. The pain was unbearable, I couldn’t even go to work for a few days.” But the worst of it is now over. With the surgical incisions healing and the skin growing around the new clitoris, Ali’s life is getting back to normal. She isn’t seeing a sex therapist as Henning recommended during their initial consultation. “Sex is something I’m not really crazy about,” she said.

Nonetheless, Ali is hopeful about the surgery having a positive impact on her life and no longer feeling ashamed when she finds herself caught in a conversation about female genital mutilation. She’s no longer a girl who is a victim, she’s a woman who took control. Even a few weeks after the surgery, when the incisions were raw and the pain was unbearable, Ali maintained a positive attitude: “Still feeling very sensitive,” she said in an email, “But I am very happy.”