Women wait for fistula surgery at the Kamuli Mission Hospital in Uganda.
Earlier this month, I visited a “Fistula Camp” run at Kamuli Mission Hospital with support from the Ugandan Ministry of Health, Fistula Care Plus project, USAID, and EngenderHealth. One of Save the Mothers’ staff—surgeon Dr. Justus Barageine—was providing care to patients there, while training and mentoring two other doctors in performing much-needed fistula surgeries. Dr. Emintone was the co-trainer. Patients ranged in age from 18 up to their 60s.
An estimated one million women worldwide live with the tragedy of fistula, a childbirth injury resulting from not having timely access to quality obstetric care. Fistula results in constant leaking of urine and stool. Thousands of new cases occur each year. Modern day lepers because of their odour, most have little hope for repair of this preventable condition. According to the Demographic Health Surveys in 2011, two percent of Ugandan women between 15 and 49 reported experiencing “a constant leakage of urine or stool from [the] vagina during day and night.”
The operating room roster for the day had 10 patients scheduled. Each of them had their wash basins and sheets lined up, ready to be used in the designated fistula ward. I sat and talked with one of the women, with the help of a midwife who translated. The woman (whom I will call “Aisha”) was waiting for her surgery that day in the ward hallway, and agreed to speak with me.
We found a quiet corner to chat, as fistula is a sensitive topic. There was a strong smell of old urine on her, and the floor was wet under her feet.
Aisha told me that she is 53 years old and a widow. She has given birth to seven children, but only five are living. One died around age two and the last of her births was a stillbirth. She reported that with her fourth child, she had a uterine prolapse (the pelvic ligaments and muscles no longer adequately support the uterus, which results in it falling into or through the birth canal). Her condition did not prevent from having more children. After the seventh, a doctor told her that she would need to have a total abdominal hysterectomy—the removal of her uterus and cervix, so she agreed.
Four days after the procedure, she noticed that she was leaking urine from the vaginal canal. Aisha attributes her fistula to the surgery; her bladder may have been injured during the operation, leaving her with a five-centimetre hole between the bladder and vagina.
In lower income countries where the Fistula Care Plus project runs, 10 to 15 percent of genital fistulas are caused by unintentional surgical errors, but the most common cause of obstetric fistula is obstructed labour, which accounts for 80 to 90 percent of the fistula cases. In some women, labour does not progress normally, and it is not possible to have a vaginal birth. Without ready access to a Caesarian section to deliver the baby, labour is prolonged, with the birth canal pressing between the baby and the pelvic bones, reducing blood flow, and causing tissues to die between the bladder and vagina (and possibly also through to the rectum), forming a permanent hole.
Aisha came to the fistula camp after hearing about it from a neighbor; her neighbor has a radio and heard a public announcement. Aisha travelled over 100 km from her village to reach the hospital using a boda boda (motorcycle taxi) and then another local taxi. Most of the women who come for surgery camp outside the ward to go through a screening process, and then wait for their procedure, which may take up to two weeks.
Aisha’s social situation is difficult. She is a widow living in a village. Living with a fistula had caused her to become more isolated. She did not go out or want to associate with people due to the leaking and smell. She used to make and sell buns to generate an income, but since living with a fistula she had stopped doing so. She reported low self-esteem, and said generally, “most of my problems relate to the fistula.” As she is so poor, two of her daughters married early, and she said the next two may also have to marry soon to relieve financial burden on the family. Early marriage will unfortunately continue the cycle of poverty, and increase the risk of her daughters having birth complications if they start childbearing early.
When asked about her hopes for after the surgery, she said, “It will be great! I will be able to do everything again.” I asked her if she was nervous or worried about the procedure and she quickly said, “I have no worries, only hope!”
She thanked me warmly, saying that she was happy I had spoken with her and listened to her story. When I asked if she had any questions for me, she paused and then responded. She told me she was worried about how she will provide for herself after the surgery, and asked me if I had any ideas about how she could improve her economic situation, since she had no income. She would have to get back on her feet after not working for 10 years.
In my Canadian healthcare setting, I would have easily connected her with a social worker who could follow-up on her socioeconomic concerns. But I had little to say … I don’t know her village and I am not an expert on the resources available in her area, if any exist. There may be a village health team that can follow-up with her. Some non-profit organizations exist to provide skills training and economic opportunity for women like Aisha, but they are not available everywhere. Poverty here is so common for vulnerable women like her. She has only a primary level education and few social connections. It reminded me of how many layers of struggle she faces as a Ugandan woman, even after having a procedure to correct the fistula. I wish I had had an answer. Recovery will not only be physical for the women who come for surgery.
The next day I saw Aisha recovering on the fistula ward. She was in some discomfort but was able to smile and greet me. According to her surgeon, her case had gone smoothly—she is recovering well from the procedure with no further urine leaking.