Sanibona – I See You

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Working as a doctor in South Africa there is more joy than sadness and more successes than defeats. But human nature’s downfall is to dwell on the struggles. Rather than letting these negative thoughts fester, I have composed a memoir … the process has been liberating.

Sanibona – I See You

South Africa has many divides, rifts between cultures, gaps between the haves and have-nots. It is easy to ignore the destitution while enjoying a lavish lifestyle enclosed by high fences. Here, when your car gets stolen (again), my affluent friends coin it “Third World Tax”; the regular compulsory payments necessary to live in luxury surrounded by perpetual poverty.

But inside the crumbling walls of the government hospitals you can ignore it no longer. Misery and anguish are in your face, in your arms and forever on your mind.

Before embarking on my work in South Africa I knew the facts.

High child mortality rate, rampant HIV, extensively drug-resistant TB – all with insufficient resources to tackle their enormity.

Now I know the faces.

The faces of the mothers and children have been etched in my memory with my guilt and profound sadness. I feel their pain and every day they stare into my mind’s eye.

A few faces in particular have stuck in my mind.

One was a newborn baby. The intern wheeled the incubator from the delivery room into the sweltering nursery, a sea of cots, swerving around the buckets filled with dirty rain water dripping through the ceiling. The baby, a nameless boy was flopped onto the Resuscitaire. He was ashen and gasping, his eyes wide and staring. Yet another birth asphyxiation. The neonatal department was bulging at the seams; it didn’t have the resources to help babies with such poor prognosis.

I dreaded these cases. I felt helpless for not being able to give the simple yet life-saving breathing support and brain cooling I know is readily available back home in New Zealand. I then felt guilty for actually wishing this baby, someone’s child, would die.

T.I.A – This Is Africa. Survival of the fittest. If this baby survived it would be grievously neurologically impaired. The paediatric wards were full of children with severe cerebral palsy – malnourished, neglected and suffering. One child at 10 years old, who was unable to feed himself, was an emaciated 5 kg. I can still vividly recall trying to cannulate his seemingly mummified arm. I didn’t want that to happen to this baby but the irreversible hypoxia had already occurred. Therefore, if I didn’t want him to suffer anymore that meant dying.

My orders to the intern? “Comfort cares.” How ironic. Nothing was comfortable about watching that child, eyes staring wider and wider, choking on blood as it fountained from his nose and mouth from a pulmonary haemorrhage. I suctioned the airway and wiped the splattered blood up my arms on my scrubs, prescribed the vitamin K and moved on to the next baby on the infinite conveyor belt of the South African healthcare system. When I looked up, I saw the intern crying. I shrugged at her to tell her she’d get used to it.

But I knew she wouldn’t, just as I never did. I was just weakly putting on a brave face to help her get through her 30-hour shift. The reality was, I wanted to cry too.

For every child that died in my care, their memory has stuck with me. I can recall every feature from their faces to their fingernails and their mothers’ wails are still resounding in my ears. To this day can I feel those asphyxiated babies’ wide startled eyes still watching me.

The paediatric malnutrition unit was heated to keep the fragile meagre beings warm. The heat intensified the already stifling feelings of guilt and shame for the neglect, poverty and HIV that brought those mothers and children together in the unit. It was too much for one young mother, who attempted to smuggle her stick-figured child out the door hidden under a chip packet in a plastic shopping bag. Most children admitted were wasted to minute waifs with rotund swollen bellies. Nearly unanimously riddled with HIV and TB, their give-away sign was their matching orange (rifampicin) vomit stains down the front of their grubby hospital gowns.

The rest of the children had kwashiorkor, our “kwash babies”. A fittingly descriptive word, “kwash” – almost onomatopoeic for their oedematous, seepy skin. The worst kwash baby was a 15-month-old twin. The runt of the family, neglected to be fed enough and tipped over the edge and into hospital with a diarrhoeal illness. Children with severe acute malnutrition don’t qualify for high dependency or intensive care because of their abysmal prognoses. Sepsis set in and as this child’s albumin near vanished she blew up like a water balloon.

In South Africa the majority of doctors give up slaving in a broken Government healthcare system to go and work in private hospitals once they’ve gained enough experience, and you can’t blame them. In doing so, they abandon the junior consultants, who in general are great at keeping children alive, but not so good at knowing when to let them die. We had done everything possible for this kwash baby, to no avail. It was time to let go. The frequent blood gas measurements were pointless because they weren’t changing our management. Yet in the middle of the night, as instructed, I found myself taking blood from this baby. I leaned over the mother, who was sleeping on a plastic chair with her head in her arms on the bed. As I shined my cellphone torch over the bed cockroaches skittered over the child, whose eyes were swollen tightly shut. From experience I already knew that attempting to take blood from the child’s hands, feet or scalp just resulted in serous fluid, so I poured chlorhexidine over the groin area. As I wiped the skin with cotton wool it just peeled away. Dressing packs were a long-forgotten luxury; instead I used my sterile glove packet to create a semi-sterile field. The needle pierced the skin and went into the femoral vein and the baby didn’t even flinch. As I was doing this, possibly because I was hour 20 on the job, I had an out-of-body experience where I was watching myself perform the procedure. The whole scene was grotesque. What was I doing? What was the point in this? How could a simple lack of food result in such torture? The eyes I never saw, but that baby’s swollen, cockroach-riddled face is unforgettable.

On the general paediatric ward, things weren’t any less grim. I was looking after a child suffering from HIV enteropathy and disseminated TB – with subsequent pancytopenia and a urinary tract infection with carbapenem-resistant enterococcus. In summary, all bad news. For weeks I had been looking after her – daily examinations, blood tests and futile fiddling with medications. One day, as I went to examine the child, her scrawny hand grabbed mine, her long dirty finger nails dug into my skin and she looked at me with a look of fury. She didn’t say anything but her eyes fixed on mine. This was her way of saying stop. And for a moment I did. I held onto her skeletal hand with tears in my eyes. I wanted to hug her and say I was sorry, sorry that there was no palliative care, sorry that the struggling health system had failed her. Mother-to-child transmission of HIV is completely preventable, HIV progressing to AIDS also. At 4 years old, she should be outside in the African sunshine playing with her friends; instead she weighed less than an average 1 year old, was bed-ridden and sitting in her own blood and excrement.

My consultants talk about today being the “era of effective prevention of mother-to-child transmission (PMTCT) of HIV” and that now is nothing like the dark days of the epidemic in the early 2000s with no available anti-retroviral therapy. Me, I disagree. To call this PMTCT programme effective is to ignore this dying child and the other hundred infected each month. Yes, the programme has improved, but it has huge holes that only the most vulnerable children in society fall through.

A week later, in the child’s last hours, an exemption was made with the security team and some of the extended family members were allowed to visit. Before they arrived, the mother took me aside and told me not to mention the HIV diagnosis in fear of shame. I agreed but I was upset.

I believe this is where the problem with HIV in South Africa lies. If you look in a patient’s file it will say “RVD (retro-viral disease) positive”, “exposed” “PCR positive” or “rapid test positive” – but nowhere will you find the word “HIV”. An HIV test is a VCT (voluntary testing and counselling), and the HIV clinics are named something sickly sweet like “Good Health Clinic” or “Hope of the People”. The first time I prescribed nevirapine I wrote “HIV exposed” in the space on the chart for clinical indication. I was later taken aside by the Head Matron and told off for writing something so incriminating on a chart. With an HIV sero-prevalence of 40% in the district, it is nearly as common to have HIV as it is to be female. Yet as a medical professional, treating the disease we still had to tiptoe around it, further perpetuating the stigma. If we as doctors don’t say it out loud – “H I V”, then how can we expect it to be accepted in the communities as just another chronic illness, not a death sentence and definitely nothing to be ashamed of? The mother of this dying child most likely avoided testing during pregnancy, then probably didn’t attend clinic appointments or give her child medications in fear of the shameful diagnosis being revealed.

A PMTCT programme isn’t effective until paediatric HIV is over, and the programme won’t be effective until we talk about HIV openly. I channel the anger in the eyes of that child dying of AIDS every day. It motivates me to fight harder for the health of children, and not just children in Africa.

To all the South African children I care for, sanibona manje – I see you always.

– by Jane Millar

Jane is a Kiwi paediatric registrar who moved to South Africa in 2015. She is now coordinating a clinical study and a Clarendon Scholar for her Oxford University DPhil in Paediatrics – in-utero HIV infection, the potential for cure.