Are we losing the battle against fistula?

In June 2015, Kevin Nalubwama went into labour with her second child at Mulago National Referral Hospital. At the time, she had just begun her career as a journalist.
She was asked to wait because there were many women in the labour ward who needed emergency obstetric care at the same time. Yet, she had been diagnosed with cephalopelvic disproportion (CPD), which meant she couldn’t have a natural birth.

CPD occurs when a baby’s head or body is too large to pass through the mother’s pelvis. Prolonged labour resulting from CPD may result in birth injuries. There are three delays that are fatal to pregnant women. The first is the delay to make the decision to go to deliver in a health facility.
The second delay involves infrastructural barriers, such as lack of transportation to hospital. The third delay occurs when a woman is already in the hospital but does not receive timely and adequate care.

“I was in labour for three days and on the third day, I had an assisted vaginal delivery by forceps. I was lucky that my baby survived. But after seven days, when urine started leaking, I thought my life was over,” Nalubwama says. Nalubwama was treated at Mulago and Kitovu Hospitals. She spent one year in hospital and could not walk for 18 months.Today, she uses crutches for mobility.
Forceps are metallic instruments shaped like large spoons that can fit around a baby’s head. The doctor or midwife uses forceps to gently pull out the baby as a woman pushes. However, improper use of forceps can cause vaginal tearing.
Over the last two years, Nalubwama has become a poster child in the fight against obstetric fistula. She is tireless in her advocacy, especially in highlighting the misconception that fistula only affects rural women.

Uganda making strides in treating fistula
Obstetric fistula is a tear between the vagina and rectum or bladder that causes urinary or faecal incontinence. Dr Haruna Mwanje, a consultant gynaecologist and obstetrician, says fistula results from complications during the delivery process and surgical error or trauma.

“By the way, women who suffer from fistula are the survivors of birth complications. For every woman that dies, there are about six women who get complications, of which fistula is among. For example, if 100 pregnant women died during the lockdown because they could not access health care, six hundred women are out there, suffering from birth complications.”
Fistula can be treated through corrective surgery and many not-for-profit hospitals, and government facilities have held medical camps where surgery is free. “Besides repairing the tear, physiotherapy is part of the treatment because the process that creates fistula damages the muscles and nerves due to prolonged compression of the nerves by the baby’s head. This leads to foot drops or walking difficulties,” Dr Mwanje says.

The 2016 Uganda Demographic Health Survey (UDHS) reports that Tooro and Ankore regions have the highest number of women who have experienced symptoms of fistula. In 2005, Uganda was reported to have the third-highest prevalence of obstetric fistula in the world. At the time, only 40 per cent of pregnant women delivered in hospitals; the other 60 per cent sourced the services of traditional birth attendants (TBAs), which exposed them to complications of childbirth.

However, a number of medical practitioners agree that Uganda has made significant strides in the fight against fistula. According to UDHS, the prevalence of fistula dropped from three percent in 2006 to one percent in 2016. In 2018, the Ministry of Health estimated that 100,000 women were living with fistula.
“We finished the backlog of fistula cases; cases of old women in their 70s who had been leaking urine for 40 or 50 years. We are now seeing fresh cases of fistula, which have been made worse by the lockdown,” Dr Mwanje says.
Dr Musa Kayondo, a gynaecologist and fistula surgeon at Mbarara University Teaching and Referral Hospital, says the improvement of antenatal care across the country is the reason why the numbers are going down.

“Hospital deliveries have gone up to about 75 to 80 per cent, compared to about 40 per cent in 2006. We now have a clear referral system, with ambulances, and health facilities to refer women who develop complications earlier than they used to do before,” he says.
Perhaps, more importantly, Health Centre IVs now have the capacity to perform caesarean sections and this reduces the delays in referral services. Currently, Uganda has 25 surgeons who can perform corrective surgery for fistula. These surgeons, with support from the Fistula Technical Working Group in the Ministry of Health (MoH) and development partners, participate in health camps, where surgery is free-of-charge.

Mental health of fistula patients lacking
Much as interventions focus on treating fistula and stopping the leakage, survivors have been abandoned to the consequences of the psychological trauma they suffered. Nalubwama says the biggest challenge is the social isolation.
“Your marriage breaks down and your children suffer. Society cannot easily take in a fistula victim or survivor. If you had a job, you cannot retain it because of the bad odour. At the time I got fistula, I was a practicing journalist but I had to leave the profession.”

A study to establish depression levels among women seeking obstetric fistula treatment found out that most fistula patients suffered from depression prior to surgery. The study carried out by Fistula Care Plus between June 2016 and December 2017, assessed 180 clients pre-operatively in the districts of Hoima, Kamuli, Kitovu, and Jinja.

Veronicah Ibanda Lukula, a clinical psychologist who participated in the study, says the tool was scored at admission and at two weeks after surgery.
“In Hoima and Kamuli, all clients had depression before treatment, while in Kitovu Hospital, 81 per cent of the clients were depressed, with 45.5 per cent of these suffering from severe depressios. In Jinja, 84 per cent of the clients were depressed, with 17.3 per cent of these having severe depression,” she says.
Post treatment screening in Kamuli found that all the fistula patients still had depression with minimal severity.

“Fistula patients have high levels of depression, so programmes supporting fistula treatment should adopt an approach that includes mental health care and social and family support, if an individual is to reintegrate into society. Government should strengthen mental health services at regional referral hospitals, where these women be encouraged to seek help,” Lukula says.
Nalubwama says women who are lucky to get corrective surgery in fistula camps or in hospitals do not have follow-up visits from medical workers. “Some of these women relocate to new villages because they cannot stand the shame they experienced. Some end up with psychiatric issues and commit suicide, she says.”

Setbacks
Dr Sr Priscilla Busingye, a specialist obstetrician and gynecologist working with St Francis Hospital Nsambya, says since fistula is a chronic medical condition, the victims were affected by the recent lockdown, in which a ban on public and private transport was enforced.

“This situation was bad in the first two weeks of the lockdown. Fistula women are segregated from public transport because of the smell. So, some hospitals arrange to transport them in order to save them from embarrassment,” she says.
Everyday, women give birth. Denying them access to health centres because of a ban on transport is equivalent to giving a blank cheque to birth complications.
“This also affects health workers who cannot access health centres in time. Many women give birth naturally, but there are those who will never give birth naturally. They need to be assisted to give birth. A number of pregnant women have died,” Dr Mwanje says.

Recurring cases
Sometimes, even when treated, fistula can reoccur, necessitating more surgery. Dr Mwanje says reoccurrence happens when fistula survivors choose to give birth the natural way.
“Once you have had a fistula repair, you are not supposed to give birth naturally. There must have been a reason why you never had a vaginal birth in the first place, that contributed to the fistula. So once you have been repaired, if you ever become pregnant, never push your baby. Labour is a very strenuous exercise, and the repaired tissues are not normal – they are not stretchable,” he says.
Some fistulas never recover and women have to learn to live with the continual leaking of urine or feaces. Dr Mwanje says this is largely dependent on the extent of injury and other factors.

“Some factors include poor surgical skills because not everyone knows how to repair a fistula. In the past, it was a big problem and that is why we had a high burden of unrepaired cases. There are different classifications of fistulas; some are simple, others are intermediate and some are severe. There are surgeons who deal with each of these.”
He adds that the number of surgeons who can operate severe fistulas is very small. Not every surgeon can attempt that kind of operation and that is why some fistulas never heal even after a number of surgeries.

What more needs to be done?
There is need for continual awareness, specifically in educating women about the importance of delivering in a health facility.
“We need to tell women that birth injuries are treatable. Birth injuries are not a curse. We also need to address the attitude of health professionals and the community when it comes to dealing with women who are suffering from fistula,” Dr Busingye says.
Dr Kayondo says there are instances when fistula is caused by the lack of professional care. “We need to build capacity of our doctors, especially those who carry out caesarean sections and the midwives who provide care in labour wards. We also need to train more fistula surgeons. If we had two surgeons in every regional referral hospital, it would make it easier for women to access these services.”
Even though fistula can be corrected, few women return to their normal life, as can be witnessed by their reluctance to talk about the condition. Some are living in abject poverty because their husbands abandoned them.