Mary, as I have been calling her, has remained severely malnourished now for four months of her almost seven months of life.
Her five year old sister has a neurological disability caused by TB Meningitis, which happens to children when their TB disease goes unchecked for too long.
Noone has ever identified the adult who must have infected the sister three years ago, meaning Mary could easily have been infected by the same person.
Mary’s mother was given intensive training on how to feed Mary as soon as it became apparent that she was being bottle fed inappropriately. Money for artificial milk has been supplied for Mary for a year via our organisation, who supply the cans of powder to her mother once weekly. She has consistently reported following our instructions. Unless she is lying about that, which is unlikely given that her older children did not starve to death, then feeding cannot be the reason that Mary has remained persistently malnourished since her first reported respiratory illness.
According to the World Health Organisation, 36% of all TB cases are estimated to be undiagnosed and/or untreated.
Approximately 250,000 children die from TB every year, which may be a very conservative estimate given how difficult it is to diagnose TB in children. Not to mention the invisible way that so many who are poor, suffer and die.
80% of TB deaths in children occur in those under the age of five. One of the main reasons is that children only need a tiny number of bacteria to make them sick, making TB very hard to detect in children. The tests that assist in diagnosing TB in older children and adults are almost always negative in tiny children, particularly if malnourished or unwell. Children are also less likely to present with the classic symptoms of TB such as clear signs on chest x-ray. Persistent malnutrition with or without intermittent chest infections is often one of the only signs that a child has active TB.
After many weeks of intense effort, making her mother present to and queue for many hours at various services, none of whom provided any consistent or even necessarily correct messages to her mother, who seems to have become very untrusting as a result, two weeks ago our organisation managed to convince a doctor to treat Mary presumptively for TB. The clues being her persistent malnutrition, the possible epidemiological link with an unknown infectious source, and her repeat presentations with respiratory symptoms that come and go. Even in Australia where TB is a rare disease, a child presenting in this way, with no other diagnosis, would be offered presumptive TB treatment and observed for clinical improvement. In a country with high rates of TB it seems like a no-brainer!
After less than two weeks of a required six to nine month treatment course, she presented once more to a busy hospital where a doctor saw the negative results which we had convinced the treating doctor to ignore, and announced categorically “she doesn’t have TB”. This incredibly confident announcement was enough to make the treating doctor doubt his decision and her TB treatment has been ceased. Her treating doctor has announced that he knows how to feed her and she will be cured by food.
It feels like watching manslaughter in slow motion, caused by an uncoordinated and ill informed system filled with people brave to make categorical announcements whilst simultaneously doing what it takes to ensure she doesn’t receive a cure.
If she is cured by food then I will be thrilled but I wont take any of my words back because there is no way any of these people can justify sweeping claims that she does not have TB. For months now, presumptive TB treatment might have seen her condition improve. With no other diagnosis, treating her for TB was the possibility of a fair chance at survival.
The uncoordinated and expensive “care” this little baby has received is a sign of what people in poor countries experience when they need to access health services. Nothing short of chaos and debt. Her mother could never have afforded to present to the different hospitals and clinics that our organisation has supported her to. Perhaps that would have been a better outcome in the end given that her prognosis remains the same despite multiple outpatient appointments.
Health systems in rich countries can be difficult to navigate, confusing and fear-inducing, and of course the big egos that medical and other health profession training seems to create are always there. But the experience of Mary and her mother, in their slow festering misery, has been nothing short of a horror story.
A friend suggested “It has the makings of a movie, let’s contact Angelina Jolie”. Sadly, the best I have to get the story into the world, is this blog.
One thought on “When God Syndrome Gets in the Way”
Some aspects of this story remind me of Australian rural practise in the early 1960s. Luckily things have advanced since then, & it is recognised that other health professionals can have a lot to offer. Decisions are made by a multidisciplinary team which accepts input from a wide base of knowledge. Medical egos should not have such a catastrophic affect on vulnerable patients.