Barriers to access healthcare
For most women, labor started at home, and they were in labor for 1 to 3 days before seeking medical intervention. However, for two women, the labor started while they were in hospital awaiting an elective caesarean section. The former were initially attended to by untrained traditional birth attendants (TBAs). All but two participants had eventually lost their babies. While for most women the baby was still born, for others the baby was alive but “exhausted” and died in the intensive care unit. Where the baby was still born or an early neonatal death, the mother never had a chance to see the baby, as exemplified by one participant:
“I had labor pains that started in the night and continued throughout the following day up to the evening of the second day. I was in severe pain and was very tired. Then I suddenly felt something give way and then noted the bleeding. This got my mother very worried, so she arranged to take me to hospital. On arrival, they told me my baby was “tired” and therefore, I needed an urgent operation. I was only told that the baby was dead at the time of delivery, after two days, after persistent begging that my baby should be brought. I never even got a chance to see the baby, as my mother-in-law is the one who took away and buried the baby at her home”.
Many women experienced delays at home, at the TBAs or at the lower health clinic from where they were later referred or from where they referred themselves. Even where there were formal referrals, there was poor documentation of the complication. Mothers arrived when it was too late, as reported by one participant:
“I stayed there for two days. The labor pains were strong but the baby could not come. I stayed there until my abdomen appeared to be divided into two. Then all of a sudden, the labor pains stopped, and that continuous pain started. It was then that my husband’s decided to take me to the hospital”.
A similar experience was reported by another participant.
“I was put away in a room to labor all alone. I was in there for 4 days, until after consulting a midwife from the local village clinic, a decision was made to take me to hospital. But then it was late in the afternoon and transport was not readily available”.
Various reasons were given for delays to access hospital care for delivery, including inaccessibility of hospitals due to the long distances, transportation difficulties, financial constraints, and delays to make decisions regarding referral for hospital delivery. Most of the women reported that they did not have much say when it came to deciding where to give birth, even if they would have liked to be sent to the hospital to deliver. Rather, spouses, mothers or mothers-in-law made the decisions. For instance, a participant expressed her frustration:
“The men make such decisions. If I go to hospital and incur any cost, I cannot pay. Also, as a woman, I have no right to take such a major decision. It is the men who take such decisions. When I was in labor, my husband was not around. So I waited for him to return, and that kept me in labor for 2 days. If I had the power, at that time I would have gone to hospital”.
Even when the women reached the facilities, they did not receive adequate or appropriate treatment in a timely manner. Most participants reported experiencing some delays: delays to receive attention when they reached the hospital, delay to make the appropriate decision on whether they could deliver normally, and delay to access theatre for surgical operations when a decision to operate had been made. There were also delays for one team of health providers to hand over to another. The delays were attributed to several factors. These include shortages of skilled staff, failure to evaluate the information from the referral letters for women who had been referred with obstructed labor, inadequate clinical evaluation (very little history taken or incomplete examinations), perceived poor documentation, poor evaluation of clinical notes by teams that had been handed over to at times of staff changing shifts, missed diagnoses, insufficient communication among staff and inadequate monitoring. This delay to access care was a major problem, as one participant explained:
“As for hospital delivery, you take long to get attention or services. Some health care providers make wrong diagnoses or make wrong decisions. And when one group comes to replace the one that has been treating your condition, they change the treatment of the first group, without asking you any questions or examining you. One group tells you that you are for an operation and another group says there is nothing written. Sometimes, even when you get an operation, you are not informed of the reason why”.
Despite the prolonged labor, some participants attributed their fate condition to the interventions by healthcare providers at the hospital; for example, vacuum extraction, and caesarean section. In their understanding, it was the interventions that may have caused the uterine rupture and associated injuries. One woman who developed an obstetric fistula believed the problem should be blamed on healthcare providers:
“I have given birth three times but never experienced such a thing. I had delivered before, actually twice, with no problem. I developed this condition following my fourth delivery in the hospital. Remember I had two home deliveries without any problem. I was taken to hospital after 2 days in labor. The doctor pushed a tube inside me to bring out the urine but only blood came out. He then used some instruments to pull out the baby by force, without success. When this failed, another doctor said I needed an operation. I think the doctor (who made attempts to deliver me with their instruments) is responsible. He must have caused the injury to my uterus and urinary system”.
Some participants, however, attributed their problem to incompetence or negligence of the healthcare providers, and believed that their outcome could have been different if the healthcare providers were more caring. This sentiment is exemplified by one participant, who had been referred from a clinic with obstructed labor, but delayed to receive appropriate care:
“I was calling the doctors (healthcare providers) nurse, but no one was listening. I was telling them that where I was referred from, I was told my baby was exhausted and that I would not manage to deliver. I told them that the contractions were very strong, but all they told me was that I should wait. By chance, one woman who was attending to another mother came and looked at me and alerted some doctor whom she knew personally. When that doctor checked me, he rebuked the team that had been looking after me, and immediately ordered that they take me next for the operation. He actually worked on me himself. What upsets me is that other doctors (healthcare providers) were just by-passing me. By the time they took me to theatre, my uterus had ruptured. I was just fortunate that the baby was saved. However, that doctor told me that it will not be possible for me to have more children”.
Participants expressed concern about the financial cost of hospital delivery. The delivery itself did not have an official fee, but most women reported paying some money to healthcare providers for services. Three women reported that they had multiple operations, as they had to be referred to the surgical theatre due to complications. They also spent a lot of money on drugs. All the participants spent more than ten days in hospital, and for four patients, the duration of hospital stay was close to one month. This cost was on top of money for transport and feeding while at the hospital. Some participants reported that informal payments were rife, and were both solicited and unsolicited. One participant developed the uterine rupture while in hospital, and spent several days while waiting to have an elective caesarean section. She reported several such transactions:
“The hospital expenses are a problem. Though officially services are free, you have to pay some money to get an operation.....I had to wait for two weeks. No one asked me for money directly. My neighbours told me that is why I am not taken (for operation). Some reported that they were asked directly for something before they could be operated”.
Experience of living with uterine rupture: multiple losses
Almost all the participants reported suffering some degree of physical complications associated with uterine rupture. These ranged from urinary symptoms (urinary incontinence from obstetric fistula, stress incontinence or minor urinary symptoms such as dysuria), dyspareunia, low abdominal pain, backache, reduced or scanty menses and urinary tract infection. Those with with obstetric fistulas reported often experiencing pain secondary to urinary tract infection. Some women reported what seemed like premature menopausal symptoms, such as vaginal dryness, severe backache, sudden episodes of sweating, heat intolerance and unexplained palpitations. The premature menopause is exemplified by one participant:
“The backache is unbearable. And all of a sudden you begin sweating, even at night.. My skin is dry. I don’t feel like I am myself. And my heart beats very fast, even when I have not done much activity. I am so dry down (in my private parts) as if I got sores down. Sometimes the area becomes so itchy that I am not able to bear it. Whenever this happens, I scratch there and that tends to worsen the itching. I often get fever, loss of appetite, and severe abdominal pain”.
Two participants experienced foot drop, which resulted from prolonged pressure on the nerves supplying the lower limbs. This followed obstructed labor which was complicated by uterine rupture and an obstetric fistula. One of the participants who experienced foot drop reported:
“I could not move my leg initially, so I was just lying down. I stayed at the hospital for some time and was discharged without even regaining use of my legs. I left the hospital with a urinary tube and a bag, after 1 week in hospital. Before I went to have the tube removed, the urine started coming from my private parts. Leaking continued after the tube was removed. ....I was told to go back after three months, but I have not been able to go. I walk with difficulty. I am not sure whether I will ever regain normal function”.
Participants spoke with emotion about the way other people, especially their loved ones, treated them. They appeared to suffer greatly due to stigma: As one participant put it,
“I feel lonely. Everyone says I have bad luck. My husband said he cannot suffer with my problem when he has not even benefited from a single child from me. My first child died three days after birth. I wish my baby had survived. Then at least that would console me”.
Participants also expressed the pain of losing a baby and of being childless. To worsen this pain was the realization that there was no hope of ever becoming a mother, as one participant reported:
“I am disturbed. Apart from the agony of losing my baby, they told me my uterus was affected. I have not seen my menses. The blood just remains inside me. It is now impossible for me to ever become a mother. I am no longer a woman. A woman should see her periods. It is men who do not get periods. Again I am not a man. If I had the baby, I would have my consolation. Sometimes I sit alone in the house and cry from morning to evening without anyone to console me”.
Similar sentiments and experiences were expressed by other participants. One participant who had two previous surgical operations during delivery had delivery by emergency caesarean section. Unfortunately, her baby died on the second day after birth. She had resumed her menses, but was informed there was no hope for her of ever having children, as her uterus had ruptured and her uterine tubes had to be ligated:
“I get my periods but I think they are heavier and last for much longer. I also get pain in my abdomen, which I did not have before. I am lucky my uterus was not removed. But I was told it will never be possible for me to have more children”.
However, another participant was not so lucky, as her uterus was removed. Subsequently, she had not resumed her menses. Unfortunately, she also described what appeared to be menoupasal symptoms. She had a hysterectomy for uterine rupture five months earlier complicated by a pelvic abscess, and described her situation as follows:
“I have not got my menses. My co-wife insults me. When drunk, she tells her friends that I am another man in my house. In fact, I feel frustrated and hurt. I was informed that there is no hope of ever seeing my menses or getting children, I am now neither a woman nor a man. I don’t know what I am. I am just there”.
For five women, uterine rupture was associated with an obstetric fistula. These participants described the stigma of urinary incontinence, which led to social isolation. This stigma often led to self-isolation in order to avoid embarrassment and humiliation.
“It has affected my private and public life. I cannot control my urine. I have to keep on padding myself all the time. I no longer share the bed with my husband. I also rarely move out of home. I avoid public places. Because when I am in public, I worry about the smell. .... and when I my clothes get wet, it is embarrassing. It is better to stay at home”.
Disruption of marital relationships
The participants reported a number of challenges of included stigma and social isolation, worry, the emotional pain of stigmatization, marital disruption, and limited social support. The majority of the women indicated that they ceased to enjoy sex in their marriage. A number of participants were still living in their marital home, but, for most, their relationship with their spouse had ended. Participants reported experiencing neglect or abandonment when their husbands turned away from them to other wives:
“I have a lot of pain when I attempt to have sex. So it is a burden. When I complain of being sick, he won’t even ask how I am doing. I never wanted this to happen. I am not even to blame. Ever since the delivery, we have rarely been together as husband and wife. I am just living in his house. I consider myself as still married but I am not”.
Enduring psychosocial, socio-economic and physical consequences
The participants also reported loss of social support, and that the only reliable family members were their children and siblings. The support received was mainly provision for basic needs, such as food and money. Some participants mentioned receiving money for treatment, or being taken to the hospital. While such support helped, it usually did not suffice to meet their needs. Mainly because of the severe obstetric condition, the women lost the jobs that had been their means of livelihood. At the same time, they incurred financial strain due to their condition. All of this led to deepening poverty and having to struggle to survive. Mostly self-employed in petty trading before the childbirth, the participants reported losing their business. Having lost their sources of livelihood, participants had insufficient income to meet their basic needs. Meanwhile, they had to spend more to keep clean and to pay the cost of treatment for their condition. Many were unsure yet of what the future would be, and were resigned to their fate, as exemplified by one participant:
“I don’t know what will happen next. Each day seems to bring new problems. As for my marriage, I hope for the best, but have accepted this as my destiny. I have to accept whatever comes. My stay will depend on them (my partner or his relatives). If they say I have to leave because all the children are dying, I will go back at my parents home. I will forget about marriage”.