It’s a month since I wrote about Mary, aka “TB Baby”. Sadly there is still no reprieve for this deteriorating almost-6-month-old. She remains untreated and dangerously unwell at home. Her weight is perilously stagnant, with no weight gain for over 3 months. She is now developing other symptoms related to her suppressed immune system caused by severe malnutrition, such as diarrhoea caused by inflamed intestines and skin abscesses caused by her body’s inability to fight exposure to skin bacteria. The only reason that she is being left in this appalling condition without treatment, is that she is poor. If a wealthy baby, or even a baby in a wealthy country with low TB prevalence and a functional health system, presented so severely malnourished with respiratory symptoms unresponsive to standard antibiotics, appropriate TB treatment would have been made immediately available. Especially when a four year old sister, suffering lifelong neurological consequences from TB Meningitis provides evidence of recent family exposure to TB.
Sadly though, when you are poor, you have to jump through a million hoops if you want to access even the most basic health care.
I will write about it properly soon, when I can collect my thoughts on the entire horrific situation and hopefully when we’ve come up with some sort of solution before it’s too late. This post is just a brief update.
This photograph, taken on one of many difficult days, shows a tiny portion of the queue at 4am outside one of Cambodia’s only “free” hospitals for children, known as Kunthak Bopha. People travel from across the country to attend this hospital with their sick children in order to access care without incurring the crippling debt that most Cambodian patients end up with. Mary and her mother arrived at 4am in order to get a place in the queue which reportedly stretches many blocks everyday. They were able to enter the triage area eight hours later, and were seen almost 11 hours after arrival. At which time she had a five minute consult, was given another course of standard antibiotics and sent home. Her TB-affected sister was present for the appointment. When her TB history was explained to the doctor, her mother was berated with “you should have brought her to see us before she ended up in this condition”! Whilst simultaneously sending her obviously-TB-affected baby sister away!
Another, earlier instance, was the day Mary and her mother attended Kunthak Bopha Hospital for perhaps her first presentation with respiratory symptoms. With assistance of an Australian Nutritionist advising from afar, myself and my Cambodian colleague had spent hours training Mum in how to make the baby’s bottles, which can be complicated without training and even more so when you are not literate. The correct amount of water should be added to the bottle first, then the corresponding number of scoops of formula powder based on instructions on the can. Due to her illiteracy we prepared diagrammatic instructions based on the correct information from the specific formula can, with amounts per bottle and numbers of bottles per day confirmed by the Nutritionist, which she was following. She came home from hospital having been told “the reason your baby is sick is that you are not making the bottles properly”. Then a set of instructions so wrong that I could barely believe what I was hearing.
After telling her that following our instructions was the reason her baby was sick, she was instructed to fill the bottle to the number on the right (eg 50) with formula powder, then top it up to the corresponding number on the left (eg 2), with water. Fearing further rebuke and confused by the contradictory information, Mum followed these instructions until she could meet with us a few days after discharge. At that time she informed us what she’d been told to do – and was therefore currently doing – and asked “why is she vomiting a lot?”. Luckily the trusting relationship she has with my colleague meant that further reassurance and reinforcement from us was enough to convince her to revert to our instructions.
These are examples of the levels of “care” that poor patients can expect to receive, the contradictory information they constantly have to navigate and the multiple presentations that they have to make to health services under challenging circumstances.
My colleague in Cambodia, yesterday, during discussions about our repeated attempts to obtain TB medications for a baby who is in effect, dying of TB, described the lives of the world’s most impoverished as:
Ordinary people living under extraordinary circumstances and pressures that we cannot begin to imagine
When we have some sort of resolution to Mary’s illness I will try to post a full article about the experience and outcome.
2 thoughts on “Dismay and Disarray”
Helen, I continue to be mortified by this. There is poverty and there is desperate poverty toppled by illiteracy and trust in a health care system which is run without compassion (and in many cases – uneducated staff). My heart goes out to baby Mary and her family.
Melinda says it all.