In January 2016, I found out with delight that I was pregnant. My husband and I had wedded 2 years prior and were still enjoying our wedded bliss. We were open to parenthood but not actively seeking it, so the news came as a pleasant surprise. As with all good news, we quickly shared with our parents and loved ones (after confirmation of the pregnancy) that we were expecting a little gift from God. Excitement all round and the month of August marked on our calendars as the time we would receive this precious gift.
We quickly got into expectant mode, read up on all that was pregnancy (to the best of our limited knowledge) and following a long search and several recommendations, selected our gynecologist. Our first visit to the doctor was confirmatory and very informative. Our baby was a few weeks old at the time and appeared to be developing as expected for that age. The doctor explained to us what would be required along the journey; supplements to take, when to attend antenatal classes, when to carry out scans etc. We listened diligently, taking notes in the little antenatal booklet provided and promising ourselves that this baby would get only the best from us (it went without say that this doctor, who came highly recommended, would honour the same promise we made to the child).
Pregnancy is a loooong journey! As the days turned into months and effects of pregnancy appeared one after another (I really think I experienced them all from the swollen feet and heart burn to constipation and mood swings!) I came to the realization that I did not appreciate my mother enough! Save for the discomforting effects, the pregnancy seemed rather routine with no red flags raised during the antenatal visits we religiously attended. Scans were carried out as per the prescribed schedule, 8, 12, 20 weeks and so on. The radiologists would carry out the scans and share the results for the doctor to make sense of. Prognosis? Everything was progressing as expected and all we needed to do was wait for nature to take its course and eventually meet our little one-a girl! 😊
At the time, several of my friends were also expecting little bundles of joy. As you can expect, we kept comparing notes. I noticed that my bump was not growing as big as those of my friends. Each time I brought this up with the gynecologist, he dismissed my concerns explaining that each mother carried differently. He proposed that being plus size, the bump may not show as big or that the fetus may be lying horizontally or into my abdomen. Well, he was the expert here, so we moved past that and continued in eager anticipation for the arrival of the little one. On 19.08.2016 (a date etched into mind), a few days after my 36-week antenatal visit, I woke up to a green discharge little knowing that this was a beginning of a nightmare!
I quickly called my gynecologist and explained the situation to him. He told me not to worry but to stay home and wait for signs of labor. He was upcountry attending a funeral. This, from the little research I had done over the past few months, did not seem right to me. I decided to google my symptoms and call a midwife friend to consult. Both my google search and my midwife friend communicated something different, in summary, this was not good at all and I needed to rush to the hospital rather than sit waiting at home! My google search indicated that this was a sign of infection (options ranged from STDs to fecal matter from the fetus) and that the risk of infection spread and even sepsis (this can be fatal) were high. I rushed to a nearby hospital and a scan was ordered. The radiologist kept asking me over and over; how far along are you, have you been attending antennal classes, do you have an attending doctor, is this your first pregnancy, are you eating right? To which I would reply, over and over, yes, yes and I am 36 weeks.
A few hushed discussions later and the reason for the Spanish inquisition came out, the scan indicated fetal development at 20 weeks, low amniotic sac fluid (oligohydramnios) and fetal abnormalities (lungs and heart). What!?? I had just seen my doctor (with my dad and husband) who confirmed that all was progressing well and on track! I thought I was having a bad dream but no, a nurse kept yelling at me. I turns out I had gotten shocked/lost in thought and wasn’t responsive. Call your husband or someone she said, you must rush to the hospital for an emergency C-section! We do not have operating facilities here so you will have to transfer to a larger hospital. I made a quick call to my husband. What’s wrong he asked? Just rush here please I pleaded. I then called my doctor. I am still at the funeral he said, I can help. Look, I shouted, I have been told x-y-z, this is serious! I think he finally got the urgency of the situation and said he would call back. He did call back after a few minutes and said he had made arrangements at Hospital X, a doctor would meet me and carry out the emergency C-section. He said he did not know what was happening but suspected low weight, a condition he said was not serious assuring me that all would be well. My husband and one of our very good friends arrived and drove me, frantically, to the hospital. What a mess of a system; checking into the hospital was an uphill task. Despite the doctor calling in ahead, the system was so bureaucratic and totally insensitive to my situation.
We managed to meet the doctor that had been appraised of my situation by my gynecologist. He interviewed us and ordered another scan calling in a specialized pediatrician to consult. Same prognosis, I would have to have an emergency C-section. The pediatrician let us have it, do not expect much! (bedside manner anyone? How about some empathy?) The doctor administered a very painful shot explaining that this would help the fetus’s lungs as it was underdeveloped (note for later). I was then taken through triage and for surgery prep. Whilst preparing for surgery, another nurse came in to give me another shot. At this time, I was highly suspicious having already been let down by my healthcare provider. I insisted on being told what the shot was for. The nurse explained that it was for the baby’s lungs. But wait, I’d already gotten this shot I told him. He insisted that I hadn’t after all, what would I know, I was not a health practitioner. I insisted that I had, the doctor had painstaking explained why I needed the shot and already administered it. I asked the nurse to confirm with the doctor. Looking irritated, he insisted that I should simply comply and receive it. I had had it by this time, I jumped of the bed and there was a standoff. He eventually called the doctor who confirmed that I had already gotten the shot! I kid you not, his reaction; But the shot is already prepared and costs Ugx100,000! Wow, his first inclination was to consider the cost/repercussions on his person rather than my health (overdose can lead to adverse outcomes for both mother and child)! What a day to experience Murphy’s law in action.
I eventually had the C-section. My child struggled to breath for a few minutes and passed on in my husband’s hands. I was simply told that the baby had died and wheeled into the recovery room to nurse my wounds and make sense of what had happened. Shivering down, I was wheeled into another room. As you can imagine, we had many questions, we were sad, angry and frustrated all at once. No one came to speak to us about what happened, just a few nurses in and out to administer pain medication. One nurse came in and asked where the baby was! We explained that there was no baby and she simply handed over a bunch of cotton pads and went her merry way. What a traumatic experience! That night, two gentlemen came by, they wanted sign-off to dispose of the fetus because the hospital did not have mortuary services. My midwife friend insisted that I must hold the child and at least take a picture for remembrance and closure. I will forever be grateful that she was there for me during that time. I was able to say goodbye thanks to her being there and advocating for my rights. To date, I do not know where the baby was buried, she was simply a statistic for the hospital.
My gynecologist arrived the day after my loss. He said that he was sorry for the outcome and that he too was surprised by the turn of events. We questioned why he had not seen this coming. Why had this happened? Was a mortality audit done to determine why the baby died? No. Why had he not realized that there were problems? Why had we wasted our time attending all those antenatal visits with him? Why, why, why? No answer. No answer would have been satisfactory anyway at that point. Because of the ill treatment during our stay (remember how the nurses behaved?), we insisted on being discharged that very day after only one night in the hospital. The exit procedures were not empathetic either. I was made to walk to the accounting office, major surgery post trauma and all, to help them finalize the billing and payment process. We were handed a discharge from with, wait for it, factors to watch out for in the baby!!! A clear lack of due care and professionalism was exhibited by these healthcare providers all through my experience. I felt betrayed; by the healthcare system, by the doctor in whose hands I had placed the life of my baby and my own, by God! Gosh, no one could ever prepare you to deal with the emotions I had to deal with during that time. To this day, I wonder how we let these things happen and why it seems okay to the health care providers.
The drive home was surreal. I am generally an optimistic happy go lucky person, but I was really tested. I knew that I had a long journey ahead of me, a journey of healing, of forgiveness and now, of advocacy. I did not receive any support from the hospital or from the doctor after the incident. There was no grief support or education, there were no follow ups, it was goodbye and good luck. To them, I was just a statistic and not even a useful one (I expected the hospital would at least reach out to investigate the incident for learning purposes. This hospital was recently acquired by a conglomerate that I hope will streamline quality assurance processes for the better). I was lucky to have a strong support system during this time, without which I would not have survived. I experienced depression. I felt that my entire being had been fragmented by the experience. To be so vulnerable and to rely on strangers for your life, this is something I had never experienced before. My friends in the healthcare system had always spoken of their profession as one of vocation, of service, of a calling. That is not what I witnessed during that time. I witnessed doctors that were not present, that did not care to listen to their patients, that treated people as mere statistics, that couldn’t care less about their client’s feelings or well-being, after all, life is fleeting and death is inevitable. I was abused. I had lost confidence in a system and in institutions I once revered. I felt betrayed and angry that there was nothing I could do about it.
After two weeks, I went back to see my gynecologist for the post-op checkup. He redressed the wound. He seemed remorseful. He seemed sad. My hope is that he learnt from my experience; to listen to his patients, to be more thorough, to not take anything for granted or to make the mistake of thinking that all pregnancies were the same, were routine. I hope that he still remembers my case; what it did to me and my loved ones, how our dreams were shattered. I hope it weighs down on him, a reminder to do better for others, to not put others through the same. Sadly, I think my hope is misplaced. I am under no delusions that ours is a learning healthcare system, that it is rigorously reviewed for improvement, that quality assurance is a sector wide shared objective. At country level, the health sector needs reform; issues from funding to training, under-staffing, brain drain, and management must be addressed. We know that there are challenges and that the healthcare professionals operate under less than ideal conditions. Having experienced firsthand the impact of the challenges in this sector, it is my urgent plea that all involved do their part to make things better.
Why do I share my experience? Each one reach out to help one! I am convinced that if I had heard someone else’s story, I would have been more careful and had a different experience. Perhaps my baby would still not have made it, but I would have found out differently or had more options on how to manage the situation. I would have been more vocal when the doctor dismissed my fears, I would have sought a second opinion. Unfortunately, qualitative studies show that mistreatment of women during childbirth is a worldwide phenomenon. I share because many of the negative pregnancy outcomes result from preventable causes. I share because forewarned is forearmed. I share to give hope to someone going through the same experience, to let them know that it gets better and that they are not alone. 2 years later, I had my rainbow baby. My subsequent pregnancy experience was very different from the first. I made better medical decisions including selection of my healthcare team. I did more research and visited several gynecologists assessing each one’s commitment before settling on the right doctor. I selected a doctor that demonstrated commitment to my journey and that was ‘present’. I exercised my right to information and professional care from my health care provider and where this was denied, I sought the care elsewhere. I must point out that I am very aware that this is a privilege not many women can enjoy hence the need for reform in the sector. We are in a take it or leave it situation that has been detrimental to many.
It takes two to tango and this story would be incomplete without mention of my husband, an ever present yet silent supporting beam. He too endured this betrayal and loss and he too survived. Positive change in maternal health care will only be attained by involving the fathers e.g. the nurse that tried to administer a second dose of medicine only stopped to confer with the doctor on insistence of my husband despite me voicing my concerns severally. I shudder to think about what would have happened if he hadn’t gotten involved. Fathers are also neglected when it comes to grief support; focus is placed on the mother as she carried the pregnancy forgetting that the father was also expecting his child. So, if you know a couple dealing with loss, please do reach out to dad as well.
It isn’t all bad though, so if you are currently pregnant, please do not despair as a result of my story. Most pregnancies result in positive outcomes for both mother and child. Interestingly, according to the World Health Organization (WHO September 2019 report) women that received mid-wife led continuity of care (MLCC) provided by professional midwives were 16% less likely to lose their baby and 24% less likely to experience pre-term birth. Why is this interesting? Most times, mothers will insist on only visiting a gynecologist during their pregnancy, however, it is my opinion and experience that professional/ trained midwives are more intuitive, can dedicate more time to the mother and are more likely to identify indicators of concern as a result of their specialized training. So do consider having a mixed healthcare team if you can.
About the author
Peace Kabatangare Zulu is a mother of 2 (Noktula in heaven and Andile, a very active 2 year old toddler). She has been married to Greg for 6 years and they currently like in Kampala, Uganda where she runs a bridal business, Exquisite Bridal.
Peace is passionate about women's issues especially maternal health having experienced challenges with healthcare during her first pregnancy. She firmly believes that no mother or child should be abused or lose a life as a result of preventable causes. She shares her story with the hope that it will help another mother out there not to go through unnecessary trauma.