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Suffering of fistula patients

Health & Science - By KWAMBOKA OYARO | May 23rd 2013 at 12:00:00 GMT +0300

It is known as the disease of the poor, yet fistula, which affects up to 7,000 women in Kenya annually, is easily treatable. Our writer KWAMBOKA OYARO, examines its impact

She timidly, almost inaudibly, says she is 18 even though she looks much younger. The girl gives the game away when she says she was born in 1998; which would make her 15. Her story begins to emerge . . . at 14, she was married off to a 37-year-old man in Migori County.

We meet her the day she is going to have surgery at the Gynocare Fistula Centre in Eldoret. The girl, let us call her Veronica, went into labour in February and laboured for so long because she was too timid to tell her husband she was about to have a baby.

“I didn’t know the cause of the pain or that it was a sign that I was giving birth,” Veronica says.

Hours later when the pain became unbearable Veronica was taken to hospital for emergency surgery to remove the baby, who had already died, and save her life. The obstructed labour caused a rupture in her bladder, or fistula. Fistulas are holes between the rectum or bladder and birth canal which are caused by injury during labour. Veronica’s injury subjected her to three months of urine leakage. In this situation, Veronica’s husband forbade her from preparing his meals and sharing his bed.

“I slept on the floor and cried every night . . . I cried because the baby I had carried for nine months was not there,” she says.

Veronica joins a long list of mostly young women in Kenya living with the degrading fistula condition. Each year, there are between 3,000 and 7,000 cases of fistula with 7.5 per cent of these women able to access treatment. The rest live a miserable life with a condition that isolates them socially from the rest of the community. Because of the leakage of urine and sometimes faeces, the victims smell. This often stirs up village gossip and derision.

Although they can live with the leakage for many years, the women risk infections.

With ignorance, cultural prejudices, poor roads, inaccessible maternal health clinics and high cost of giving birth, physicians fear that unless something is done urgently to reach the thousands of women living with fistula in villages and restoring them, their health could irredeemably be jeopardised. To raise awareness and get the government to channel resources to help these women, organisations that have been dealing with fistula in conjunction with the United Nations have set aside today as the first-ever International Day to End Obstetric Fistula. It will be marked in Eldoret.

The day’s theme is “End fistula. End the shame. Treat the patient.” The organisers hope to start a process towards ending the fistula traumas — physical (leaking), psychological (ridicule and mental anguish) and social, where the woman is divorced and discriminated against.

A day after the operation carried out by Dr Hillary Mabeya, a fistula surgeon at Gynocare Centre, we meet Veronica and three other women who went through surgery to have the fistulas repaired. Unlike the day before, we find the women in a jovial mood. “I can’t believe it!” says Veronica excitedly. “I am whole! I am truly a woman again!”

To repair two fistulas, her operation took three hours. A fistula repair, depending on severity, takes one to seven hours. The patient is then advised against engaging in intercourse before six months, otherwise they risk getting another fistula. They are also advised against having a baby until 12 months after surgery. All the subsequent births have to be through Caesarian section.

Dr Mabeya, who is also the Head of Reproductive Health Department at Moi University, says he has restored dignity and given back lives to hundreds of women since he started performing the repairs 15 years ago. The patients are not charged for the operation but non-governmental organisations sponsor the surgeries and hospital admission, which is up to two weeks and costs between Sh30,000 and Sh50,000. However, Dr Mabeya, who says his service to women with fistula is a calling, offers his service without charge. Under normal circumstances, a surgeon charges a fee of Sh70,000 per patient. Under this sensitisation programme, organisations that pick the patients’ bills include Amref, United Nations Population Fund (UNFPA) and One by One, a US-based humanitarian organisation.

Last year, Gynocare repaired 300 patients while 131 were repaired at the Moi Referral Hospital Eldoret. On average, Dr Mabeya repairs 30 patients every month. His younger patients who have been successfully repaired call him “dad”. Dr Mabeya says this gratitude and the changing of lives is the best reward he gets. There is one remarkable patient who has become the highlight of his work; she had had fistula for 57 years and he successfully repaired her in 2011.

“For all those years, she never went to church or attended social functions due to fistula — she would leak urine and the smell could embarrass those around her. She had longed to die many times but when I operated on her at 83, she got a new lease of life. She kept asking me where I had been all those years. Yet what had tortured her for that long was a tiny hole which I fixed in just one hour,” says Dr Mabeya.

When the woman was discharged from hospital two weeks after admission, she was overjoyed. A few months after the surgery she opened a bakery and insists that her life has just begun.

Fistula is known as the disease of the poor because it affects the poorest of citizens. It is common among pastoralist communities where early marriage is rampant. Because the brides are as young as 12, their pelvic bones have not matured or ready for the rigours of childbirth. This subjects the girls to prolonged labour and since they live far from hospitals, they are expected to deliver on their own or with the help of a midwife who will often not admit failure until it is usually too late. Because there are usually no vehicles and paved roads, the mother reaches the nearest health facility, which in essence is tens of kilometres away, after long torturous hours. With this obstructed labour, any or all of these things are likely to happen: The mother will die, lose the baby, lose her uterus or end up with fistula.

Fistula is a condition that can easily be avoided. Kenya’s problem with dealing with this condition is not lack of equipment or theatres; it is a result of an acute shortage of professionals to do the surgeries.

Once a fistula occurs, a woman’s life is turned upside down. Dr Stephen Wanyee, an obstetrician and fistula expert with the United Nations Population Fund, explains that in West Pokot, some husbands have returned their wives to their fathers and demanded a refund of cows given as bride price. This is more so if the young wife develops fistula during birth of her first born.

This, depending on the time of intervention, means she may never get another child or she will get subsequent children strictly through Caesarian operation—something that limits the number of children the couple is likely to get. Among the pastoralists, the more children you have the more respected and wealthy you are.

About 90 per cent of fistula is caused by prolonged labour, while other causes include rape, cancer of the cervix, trauma injury and surgical injury. It is 100 per cent preventable and 90 per cent treatable.

Lack of skills to operate fistula hinders the 100 per cent recovery. There are only eight surgeons in the country trained to repair fistula and five of these are based in Nairobi while two—Dr Mabeya and Dr Amon Chirchir—are at the Moi Referral.

Dr Mabeya says because they lack skills, some doctors casually prescribe painkillers and advise patients to exercise yet the only recourse is repair.

In the region, Kenya has buried its head in the sand when it comes to dealing with fistula. In Ethiopia, due to rampant cases of fistula, they have a hospital that handles such patients and rehabilitates them to be absorbed into the community while Tanzania and Ethiopia have factored in fistula in their demographic census. However, having a hospital for fistula patients is not really something to be proud of.

“Developed countries eradicated fistula in the 1890s. In fact, the last fistula hospital was closed in New York in 1898,” says Dr Chirchir. Kenya can achieve this by ensuring that women get adequate obstetric care.

To get this service, access to health clinics must be made easier. Besides causing fistula, prolonged labour causes death of the mother and infant. Maternal mortality in Kenya stands at 8,000 annually—an equivalent of 22 mothers dying every day. There is also another serious danger of prolonged or obstructed labour; the infants die or get brain damage and live with conditions such as cerebral palsy.

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