Obstetric fistula: a matter of neglected Human Rights

Photo Credit: Charlie Ainslie Photography

On the obstetric fistula ward at Kitovu Hospital, Uganda, I came across Ruth (not her real name), a patient who had undergone successful fistula surgery. She readily agreed to my request to recount her story.

In the hands of others
When expecting her first child, Ruth had been keen to follow the advice of her midwife to deliver in a healthcare facility where she would be cared for by a skilled birth attendant. When her labour started, she went quickly to her local health centre to receive care.

Having assessed Ruth, the midwife realised that her labour was not progressing well. At only 1.45 meters tall, Ruth’s short stature meant she was at increased risk of developing obstructed labour, so the midwife referred her to the district hospital. Ruth and her family hurried there, where they faced a long wait for the doctor to arrive. The doctor made a decision to perform a caesarean section and proceeded to operate on Ruth.

The hidden cost
Ruth’s baby had died in the womb during the time she was waiting for treatment and was stillborn. The zigzag scar on her abdomen provided external evidence of very poor surgical technique, but there was a hidden cost internally for Ruth that became apparent in the days following the surgery, when she started to notice an uncontrollable leak of urine.

During the surgery, Ruth’s left ureter (the tube connecting her left kidney to her bladder) had been accidentally cut and the cut end was leaking urine through her womb into her vagina.

Ruth had gone home, having been falsely reassured by the doctor that the leak would soon stop. She was grieving the loss of her baby, but sadly further problems awaited her. She was ostracized by her husband and his family because she was wet all the time and smelt strongly of urine. She was sent back to her parental home in disgrace.

Lonely consequences
She struggled with loneliness and depression for 3 years before her father heard some information on the radio concerning obstetric fistula and realised that treatment was possible. He managed to find funds to help Ruth travel to Kitovu, where her fistula was diagnosed and surgery was provided to close the fistula. Ruth explained to me that prior to her surgery, she had felt so depressed that she had often contemplated suicide.

Aside from the devastating consequences of uncontrollable incontinence of either urine, faeces or both, obstetric fistula is associated with multiple other physical and psychological consequences. Physically, women may suffer from neurological injury to pelvic nerves, leading to foot-drop and contractures. They frequently develop severe dermatitis (inflammation of the skin) as a consequence of being wet all the time, and bladder stones may develop as women try to control the leakage by reducing the amount they drink, causing urine to become very concentrated.

The majority of women with fistula have suffered the loss of their baby, stillborn as a result of neglected obstructed labour. Not only are they bereaved, but all too frequently they are ostracised by friends and family. Another Kitovu patient described how when she tried to go to a salon for hair braiding, she was humiliated and felt compelled to leave after someone said “Has a goat come in?” Women suffering from fistula lose their ability to earn a living and are often abandoned by their husbands, so become destitute. Talking to fistula patients reveals that many, like Ruth, have contemplated suicide.

The unmet need for expertise
A fistula is an abnormal connection or opening formed between two anatomical areas. Obstetric fistulae can arise as a result of prolonged obstructed labour, when the baby’s head is stuck in the mother’s pelvis for many hours or even days. Some, as in Ruth’s case, occur due to poor quality surgery. A study of fistula in the Democratic Republic of Congo found that 74% of fistula patients actually began their labours in a health centre or hospital, indicating that delayed and poor quality care, rather than the patient failing to reach the facility in time, was a significant causative factor.

Of these fistulas arising within facilities, a significant proportion are caused, not simply by acts of omission or delay of care, but by the standard of treatment delivered. In many locations, caesarean sections are performed by non-specialists, who may not have received adequate training or supervision to manage more difficult procedures, such as caesarean section in the second stage of labour, especially following many hours of obstructed labour.

In these cases, inexperienced surgeons lacking adequate expertise may accidentally cut either the bladder or a ureter during the procedure. If this goes unrecognised and unrepaired, a fistula will often form. In one large case series of fistula cases occurring in East Africa, Bangladesh and Afghanistan, it was found that 13.2% of fistulae could be attributed to injuries caused by provider error, so called iatrogenic fistulae. Four out of five of these fistulae developed following surgery for obstetric complications: caesarean section, repair of uterine rupture or hysterectomy following uterine rupture.

The unreachable solution
Surgical cure is possible for the majority of fistula patients, but many women suffer from this debilitating condition for years before the opportunity for treatment arises. Having lost the ability to earn their living renders the cost of transport to a fistula treatment centre unaffordable for many women, even if treatment itself is provided free of charge.

Surgery for fistula is complex and requires great expertise. Although capacity for fistula repair has increased, it is still the case that the prevalence of fistula outreaches the capacity for repair. It is impossible to gain an entirely accurate view of the prevalence of obstetric fistula, but best estimates suggest that more than one million women suffer from this devastating problem in Sub-Saharan Africa and South Asia currently, with an incidence of more than 6,000 new cases each year.

So, many women remain untreated and continue to lead a life devastated by the consequences of fistula. It is therefore imperative that all possible steps are taken to prevent obstetric fistula formation.

Building capacity for hope
One such initiative is a new course on obstetric care being developed by the Centre for Maternal and Newborn Health. This five-day training course, targeted at doctors, anaesthetists, theatre staff and midwives, will focus on improving the quality of care provided to women undergoing caesarean section and assisted vaginal delivery. Following an initial pilot in Cambodia in January 2018 funded by GIZ, the course will be delivered in Kwara state, Nigeria in September 2018 with support from Johnson and Johnson. It is hoped that this training, if scaled up, will result in a reduction in cases of iatrogenic fistula by improving both management in labour and surgical techniques. This course will complement CMNH’s existing emergency obstetric and early newborn care ‘skills and drills’ training, which promotes the use of the partograph as a decision-making tool to prevent prolonged obstructed labour.

The avoidance of obstetric fistula is a matter of human rights. With the provision of good quality care, obstetric fistula is an almost entirely preventable condition. Every woman has a right to expect that she will be provided with care to enable her to labour and deliver safely without suffering from such a devastating condition. Much work remains to be done to realize this most basic and fundamental human right.

 

About the author
Dr Helen Allott is a Senior Technical Officer at LSTM, who previously worked as a consultant obstetrician in the NHS for 22 years. She is the founding chairperson of Kisiizi Partners, a UK charity working to provide health care in a remote rural area of Uganda. Her work in Uganda and elsewhere has been focused on the prevention of obstetric fistula and other maternal complications by providing training to health workers regarding the quality of obstetric care.

 

Photo Credit: Charlie Ainslie Photography, Courtesy of Flickr.