“I have lived with fistula for over two and a half years now. I got fistula in 2015. To date, I am still leaking and if I do not open up, one cannot tell I am a leaking woman. I got fistula as a result of hospital delays. This happened in Mulago National Referral Hospital where I went to give birth to my second child. After attending more than four antenatal visits as medically advised, the process did not go well as expected. The key factors which hiked my chances of getting fistula were that I was a teenage mother who got into child marriage due to family financial backset; that I happened to be a child labourer at 14 years.
For fear of dropping out of school in Senior Three, I opted to take a dreadful decision to give in to some (Mr.X) who was ready to take me back to school. After failing to register for my UACE (A-level) exams, I gave in to a conditional love life (“give birth for me and I take you back to school”).
Since I had toiled a lot looking for my fees from Senior Three to Senior Six, I had endured a lot. I decided, let me give it a try. I conceived my first born at 17 in 2009.
I didn’t get any complications at that time but on the second attempt—that is after resuming school and attaining my diploma as a journalist. Having gotten the career, one year down the road of putting my career into practice, I conceived the second baby but I got fistula.
How it came about
I happened to be admitted at Mulago hospital and was put under constant monitoring. Later on, I was enrolled on the theatre list. After two days in labour, due to the big numbers of patients awaiting C-section on the same ward, I never saw theatre. Later on, I had an assisted vaginal delivery by forceps on the third day in labour.
By the end of the process, I realised I had lost sensation in the lower limbs. I got paralysed from the lower abdomen downwards. I could not feel my legs.
Urine was not yet leaking then. I started leaking seven days after my discharge. Before I was discharged, I reported the paralysis. I was told it happens and that it might go eventually. Later on, after seven days, I started leaking urine. I reported back for treatment.
That is when I was diagnosed with a neurogenic bladder with complex nerve injury; a condition that was deemed incurable after seeking medication for over a year. Since then, I was introduced to the coping mechanisms I am using up to date.
One of the coping mechanisms I use is timely emptying of my bladder using self-catheters to avoid getting wet. Besides, I use tampons during menstrual periods because disposable diapers cannot hold the two flows at a go.
Without constant padding, I cannot be in any social place. Being a teen mother as well as a victim of child marriage hiked my chances of falling victim of childbirth injuries.
However, life as a fistula survivor is not easy at all because I live a costly life. I spend more of my savings on buying adult diapers than what I spend on other basic needs.
I would term life with fistula as total hell on earth. It not only affected me as a victim but my family too. At one point while in hospital, I had no caretaker and had to resort to my six-year-old son to be my caretaker.
He had to empty my urine bag so he developed total hatred for his baby sister. He made statements like, “mummy, why don’t you give back Doctor’s baby and you give back their sickness?”
I decided to use my experience to advocate on behalf of fellow victims because I know exactly what it feels like to live a fistula life. With the experience I have gone through, I came up with a development initiative to officially advocate through an organisation called “Hope in Life” to embrace the gift of life so as to achieve safe motherhood for all.”
As told to Save the Mothers East Africa congregation on February 23, 2018
The Safe motherhood programme is hosted by Uganda Christian University, Mukono.
Atate of fistula
Globally, at least two million women live with the condition and 50,000 to 100,000 new cases occur every year.
According to Dr Edson Muhwezi, the United Nations Population Fund assistant representative in Uganda, fistula is one of the most serious injuries women face during childbirth in the country.
In 2015, over 2,560 fistulas were repaired across the country but there are new cases occurring every day.
Speaking at the fourth commemoration of the International Obstetric Fistula day in Arua District in May 2016, Health Minister Sarah Opendi said, “At the moment, there is a surgeon in each of the 13 regional referral hospitals to carry out fistula repairs. In addition, there are surgeons in seven private not for-profit hospitals which is a great improvement. But we have a backlog of 200,000 fistula cases and 1,900 new cases recorded every year; these surgeons alone are not enough to deal with these many cases,”
Source: UNFPA and Daily Monitor file reports