Pregnancy is an uncomplicated business (in the medical sense at least..) for most women, most of the time. But when things go wrong, the situation can rapidly deteriorate putting both the mother and baby’s lives at risk; babies get stuck, mothers bleed both prior and after delivery, and many suffer a serious disorder of blood pressure called pre-eclampsia which can lead to fits and strokes. The avoidance of such grave consequences requires a tight system of antenatal surveillance and rapid sequence of action when complications arise. Whilst the health system in Uganda has the potential to supply each of the component parts of this system, they are weakly tied together, and elements of the chain may break due to basic inadequacies in infrastructure such as electricity and surgical supplies.
Each year we teach a two week of module of maternal, neonatal and child health which forms part of the East African Diploma in tropical medicine and hygiene (DTM&H). Seventy-two post-graduate doctors from both East Africa and around the world pass through and will expect an introduction to the practicalities of clinical medicine and research in sub-Saharan Africa. Each afternoon we take groups to meet women and hear stories which exemplify both the public health and obstetric challenges a woman may meet along the tortuous journey of pregnancy in Uganda. We make an effort to celebrate good maternal and neonatal care, as well as pick up on shortfalls. The cross-cutting themes include the impact of gender inequalities, educational background, and socio-economic components of care-seeking behaviour. Here are some of their stories. Names have been changed.
Robhina is a 26-year-old lady, with a good educational background. Her first baby was born by Caesarean section due to obstructed labour; the baby’s head was simply too big for the mother’s pelvis, a common problem worldwide but even more prevalent where woman’s growth is stunted due to malnutrition in childhood. A vaginal birth is possible after Caesarean section, but must be done in a very supportive environment, and probably avoided in the context of pelvic insufficiency. Robhina laboured at home for a considerable time before going to a health centre IV, which should be able to provide blood products and a Caesarean section if needed. She continued to labour there overnight in considerable pain before it was clear she would need an operation. Unfortunately no doctor was there to do the operation and was transferred an hour across town to our facility which was overflowing. She was received in a very poor state and in agony. After another hour she was in theatre; her uterus had ruptured along the previous Caesarean scar and the baby was found floating free in the abdomen and already dead. She got the blood transfusion she needed and the surgeons managed to repair the uterus and avoid a hysterectomy (removal of the uterus). The team did a great job saving the woman’s life, but it was too little too late for the baby. We see around 4 of these ‘fresh’ stillbirths every day. Rhobina told her story totally matter of fact; she clearly had no idea that this was an avoidable outcome. So common are such stories amongst women that they are normalised. I asked her why she hadn’t come to the hospital sooner to deliver. It came down to the way she had been treated previously; talked down to, no privacy, scorned for complaining. Why not have a go at home with loved ones around? Explanations like these remind us that the respectful care of women is an integral part of future health system reform.
A new wave of medical disorders in pregnancy
Urban Africa is not only about empty plates. There is a rapidly expanding middle class with a taste for refined sugar, and a culture which associates large abdominal girth with higher social class. As a result we are beginning to see a rise in cases of diabetes in pregnancy. Doreen is 31 and has just had her third child. The first was delivered normally and weighed a decent 4.2kg. The second was even bigger at 4.8kg and needed to be delivered by Caesarean due to obstructed labour. Big babies are the hallmark of untreated diabetes in pregnancy; the high sugar level means the baby lays down more fat around the shoulders and abdomen raising the likelihood of complications at delivery. They also get so used to the high sugar and produce so much insulin that when they are born into the world their sugar level plummets which can kill. There is no screening for diabetes in pregnancy in Uganda. We do not yet even know which screening test would be best, or even what we would do if it was picked up as management is not straightforward and beyond the present antenatal system. As I spoke to Doreen the story of diabetes in her case was clear. This recent baby needed a Caesarean as there was not enough fluid around the baby (diabetes causes both too much or too little fluid). Her baby was wrapped up in sheets beside her and I see a tiny area of the sheet flickering over and over again in a repetitive way. I ask to see her 2-day old baby and sure enough the tiny girl was having a seizure, repetitively jerking her left arm up in the air. Doreen has no idea, and no doctor has been around that day. One junior doctor usually has to cast an eye over around 80 women and their new babies in the course of a morning. Few get a thorough check, and besides Doreen has no diagnosis. We take her baby to the special care unit for anti-convulsants; perhaps a low sugar level soon after birth could explain the fits, or infection, or low oxygen levels, we don’t know. Fortunately both are discharged a few days later, but the impact of the seizures and damage to the brain may not be realised until months later.
Living with fistula
Ruth is 43 and has travelled from a very rural farming community. She has a coy smile and has the air of a once confident person who has suffered too much hardship in her life. She came to the hospital after hearing a radio advertisement. She had been leaking urine for twenty years having developed a vesico-vaginal fistula (abnormal connection between the bladder and vagina) after the birth of her third child. She laboured at home for three days before giving birth to a baby who had already died; she had been unable to afford the transport to get to the nearest hospital 7 miles away, a mere £3. The pressure of the baby’s head, stuck in the pelvis, caused damage to the tissues leading to abnormal tract formation. It’s a condition very rarely seen in the West, but still common in areas without accessible and affordable health services. Since that time she withdrew from village life, and farmed alone, hiding her shame from the community. Fortunately a supportive husband stayed with her, though many are not so lucky. Ruth has had decades to contemplate her fate, has come to terms with her condition, and is now happy that something may finally be done about it – surgical repair. Opposite Ruth sits another girl, with the same condition, but at the start of her story. She is very small, and looks incredibly shy. She is only 16 years old, but as I gain her confidence she tells me her story. Her first statement says so much; her family was not able to pay for her to go to school, so she stayed at home and became pregnant, totally matter of fact about the inevitability of such a chain of events. Again she laboured at home and got to the hospital too late. A dead baby was delivered using a suction cup in what sounded like an extremely traumatic series of events. She started leaking urine 6 weeks later, again due to injuries from a prolonged obstructed labour. She looked very vulnerable and alone, in a room full of women with totally avoidable internal injuries, victims of a world that still fails to recognise the equitable status of women in society.
The antenatal visit
Annett is a 24-year-old lady, a bubbly character with a broad smile across her face. She had given birth to a baby boy the week before and is overjoyed. Her first pregnancy had not been so successful; she had suffered high blood pressure which hadn’t been picked up in her antenatal visits. They didn’t have the basic testing strips for analysis of the urine, and blood pressure had not always been measured. She lost her first baby at 34 weeks of pregnancy. The staff encouraged her to get to antenatal visits early in subsequent pregnancies. Annett had the confidence and educational ability to speak up at her antenatal visits and demand the basics were done. She also had some money to get an antenatal scan – less than £10 which is far more than many can afford. As often happens she suffered with high blood pressure again. She came into the hospital at 26 weeks and was managed with medication for another 5 weeks to give her baby the chance to mature. At 31 weeks her condition was so severe that her baby had to be delivered, since the placenta is the cause of the blood pressure disorder. Her baby boy was taken to special care unit. On the first day Annett showed me pictures on her phone, but the next day took me to see him in the neonatal unit. Seventy similar babies were lined up, many with NG tubes in their noses, their mothers expressing milk and pushing it down the tube with a syringe. One doctor has the job of looking after all these delicate beings. Annett tells me all about what she does several times per day for her baby, and in immense detail. This is a mother’s love and casts out the common attitude of ‘just another stillbirth, or just another neonatal death.’ Annett and her baby had received great care, using basic principles of medicine. But she only got there because she had the educational and financial means to transcend the gaps in the chain, a privilege of few. Four young women, one just 19 years old, died of this high blood pressure disorder in our two weeks on the unit this year.
They are morbid stories in themselves, but more frightening is the sheer number of similar stories that are told every day, even in this one hospital. An old friend presented me with an audit of the women’s health service in the same hospital from 50 years ago, 1967-1968. Each maternal death is detailed and the stories are hauntingly similar. However much we try to champion good progress in sub-Saharan Africa, with health statistics improving year on year, it’s hard not to feel like the two worlds in which I spend my time are moving further apart. Whilst total average worldwide wealth improves, the inequities both within and between nations are worsening. It’s easy to be paralysed by the enormity of the problem, but inertia is far from an effective solution. Sharing stories like this will not change the world, but the least one can do is advocate for those without a voice. It may at least help in appreciating the excellent standards that our National Health Service affords our women and mothers.