Obstetric fistula is a birth injury that is essentially an abnormal communication that often comes after obstructed labour, between the vagina and the bladder for VVF (vesico-vaginal fistula) and/or between the vagina and rectum for RVF (recto-vaginal fistula). Most women in Uganda who are affected have VVF. Statistics put existing cases are about 200,000 and there are 1,900 new cases expected annually. In addition to these new cases, there is a backlog of several affected women living with the condition, waiting for surgery. Many times, unaware that their condition is operable.
Most of the surgical repairs done in Uganda occur during repair camps. Some hospitals call it “VVF Week” and others, like Kamuli Mission Hospital just call a repair camp. An average of 20-25 women are operated on during one camp and in one year, there are about 2-3 camps, depending on visiting surgeon availability and funding. In March, Kamuli Mission Hospital had one such repair camp where Dr. Glyn Constantine and theatre nurse, Brenda Gray, from London were kind enough to let me go into the theatre to observe some surgeries.
Repair surgery for these women is a big deal. Several people have referred to fistula as a “double tragedy” because in addition to losing their child (majority are stillbirths), they are faced with this incontinence and the smell of urine as a constant companion. To be repaired is to be restored, to be brought back to life and given back dignity.
I was suited up in blue scrubs and white sterile theatre shoes. Then I walked into the theatre and there, a woman was lying, awake, with her legs open and butt hanging from the edge of the operating table, as doctors stitched and dubbed at blood with sterile gauze. A lot of thoughts went through my mind in that instant. “What a clean shave!” “I wonder if she feels evaded, or is just so desperate for a successful surgery she doesn’t care.” I asked Brenda some stupid questions: “Can she feel their fingers?” Brenda patiently explained that she could, with slight discomfort but that she (Brenda) would continue watching her facial expressions to be sure it was just that slight discomfort. When the spinal anaesthesia is wearing off, the nurse can tell from patient’s face. At several points I observed her smile at the patient and occasionally touch the patient’s arm, with a gentle caress. Brenda doesn’t know any Lusoga and when she needed to find out if the patient was okay, she asked one of the student nurses in the theatre to translate.
I refused to look past the little cloth that was keeping the woman’s special place private, until I got engrossed enough in the technical aspect to be curious. I had found out that she was the unscheduled first patient of the day, because the other one had failed the blue dye test. This test tells the surgeons where the injury is. Blue dye is pushed into the woman’s bladder by catheter and then when she leaks, the surgeon can easily locate the site of injury, given the colour of the dye. The woman who should have been laying with her legs open on the theatre table had not leaked (with blue dye, she meant her fistula was not a miscommunication that involved the bladder). She was sent for an ultrasound scan to determine where her fistula was. The one on the table then, was found to have her injury further up than the doctors expected. I looked to see what was going on exactly.
There were several forceps and scissors of all shapes and sizes, holding different pieces of flesh open so the doctors could access the tear. An episiotomy -a surgical incision used to enlarge the vaginal opening-had been done, like is done in natural births so that the baby’s head can get out of the mother. It was instrument-central with something holding more pieces of flesh than I imagined that little place to have. The operating surgeon, Dr. Constantine was being assisted by Dr. Alphonso Matovu who is the hospital superintendent. They stitched and looked, and stitched and held, stitched and tagged. Sometimes they asked me to stop asking questions so they could concentrate because “this is a crucial part.” Then when they were done with what they had thought to be the site of injury, they did the blue dye test again.
A huge syringe was filled with blue dye, lubricated with glycerin and then the dye was pushed into the woman’s bladder. With every millimeter of dye that went in, my own bladder felt fuller. By the time everything was in, I wanted to pee. I could not leave though because I was as anxious as the surgeons to have her catheter send out blue dye without soaking any of the gauze (or her exposed multiple layers of tissue). And it did! Dr. Constantine let out a shout of triumph and I had to ask, “Does he do that every time?” He has been travelling to Uganda since 2005, two-three times each year. With every visit, he is in the theatre restoring dignity to women, an average of 22-30 women per visit. One would think he was over it by now. But if he is kind enough to use his breaks from a London operating theatre to come do surgery in a Kamuli theatre, he definitely realises what this means to every woman that is wheeled into the theatre. Enough to celebrate every woman’s successful surgery, especially one that turned out to be more difficult than they expected.
The surgeons start to close her up and gradually the scissors and forceps and dangling stitches disappear. At one point, Dr. Constantine scooped out blood with the spatula that had held her open. He poured it and I watched it spill on the cloth that covered his scrubs. The cloth had already been the place where he had dropped many dirty blood-soaked swabs after he cleaned her. My eyes might have popped out a bit with the blood scooping though, and my curiosity is obviously stronger than any delicateness because I stayed. I stayed until she was fully closed and then sent away with an IV drip and a catheter.
There was approximately 10 minutes before the next patient came in. Ten minutes in which Brenda got the next chart and read out the important details to the surgeons, ten minutes in which Dr. Constantine grabbed a biscuit and sipped on about half a bottle of water, ten minutes in which Dr. Matovu left the theatre to check on other hospital activities. The next patient was an old woman. I wondered who had shaved her. She looked older than my mother so I asked for her age and was told 78 years. I then watched as they spread glycerin allover her special place and thanked the Lord she had been knocked out. Brenda had asked before the anaesthesia, “Does she know what is going to happen to her?” and of course I asked her, “Do you ask that every time?” because she had been coming to Uganda for this longer than Dr. Constantine. She smiled and said she did. It was important. And, it is.
Nothing happened to the old woman. Dr. Matovu pressed on her lower abdomen then bent and looked inside her and said, “Her uterus is full.” The chart said she had fibroids and when Dr. Constantine looked at her too, he had a quick doctor-words-filled conversation with Dr. Matovu and they decided that surgery was not possible. They might have explained to me how they arrived to that conclusion but I was too pre-occupied with wondering how this 78-year-old was able to live this long with fibroids. A friend that has them is always in hospital and she knows every painkiller that exists, class A drugs too.
While I was still in that daze, a patient walked in. She walked in! I could not get over the whole walk on your two legs to the theatre. Are you not supposed to be wheeled in on a table? She wore a little hospital gown that did not do much to cover her nakedness and as I looked at her, I thought she could have been any woman. Any woman, except for that little trail of liquid down her leg. She looked worried, and I probably looked like I wanted to run, run and run until I found a happy place and forgot the little trail of liquid down a woman’s leg that had changed her life.
I did run. I told the room that I was off to the surgical ward to check on some women. Brenda asked me to check on the 78-year-old, make sure she was back in the ward and gratefully, I left the theatre.
In the surgical ward, there were about twelve women, already operated on. They were to stay in the hospital for fourteen days after surgery, during which days they were monitored. Brenda had explained earlier that sometimes this rest and monitoring makes all the difference between complete cure and unsuccessful surgery. The body needs time to heal and the hospital admission forces the women to let their bodies heal. Every woman had a chart above her bed and on it, a medical worker would note three Ds: draining, drinking, dry. This was their little report card and while we chatted, I was told about one who was not drinking. She had scored only two Ds and her immediate neighbor was concerned.
“Kino kyo, kyabayidira,” [This one, this one came for you] one male sympathiser said when he passed by the ward. We all sighed in response. There was not much one could say. These women just wanted to be healed, to get their lives back. They had different stories. One had had fistula for just three months, another, 78-year-old, had had it for 65 years. There was one who had a disability and there was one whose baby had survived. Some of these women were having their first medical visit in a long time and were just finding out they were HIV-positive. One had somehow lived well enough with her injury to have seven children. Their fistula surgeries varied in difficulty and the doctors indicated on each chart whether it was a simple surgery or a difficult one. Each one of them had a different story, and every one of them was hoping for a birth injury to heal.
They were watched over by Loy Tumusiime, a fistula survivor who has been working to help other women for the past three years. As Uganda Village Project Fistula coordinator, she has reached out to women, shared their story and helped them access repair surgery. We sit in one of the empty private rooms and she tells me her story, one that I am sure she has told over and over to help and to inform. She was operated in the same hospital. “Were you awake too?” I have to ask and she said she was, for her first operation. She had to have two operations because she was found to be leaking in two different spots. After the first operation, she was not sure they would work on her again but after three months, they did. They stitched up the second hole and she got her life back. She shared different anecdotes from her life. About her daughter who was seven, helping her wash her clothes and about a church that always had a separate basket for “omulwadde waffe” [our patient]. She had long since given up her job at a salon because of the smell of urine. She could not even travel to Mbarara to see her sister and seek her help and support because the thought of travelling in a bus with so many people was unimaginable. So she stayed, with an unsupportive husband that asked for food and then ordered her out of the house, endured her condition until she heard of the repair camps.
She knew better than many what this meant for the women lying in the hospital beds with catheters, waiting for Dr. Constantine to mark off three Ds on their charts during his ward rounds.
I left Kamuli with a decided attitude of hope for the women. I had met strong women that had survived and doctors that were dedicated. It is a tragedy that has a possible end.