Harissa is a year-and-a-half old, but she has the appearance of a baby a few months old. Her TB has left her so malnourished that she only weighs 4 kilos – less than when she was born. Her skull bones protrude and make her look aged, despite her baby size. She has retained some of her development, so it is incongruous when she talks a little, or when she shows the dexterity to put her soother in her mouth by herself. Her mother is well-dressed in modern Tajik clothing and headscarf and at first glance you would not suspect an overly religious leaning. So there was panic all round last week when the mother took Harissa home from hospital, informing us that she would be taken to the mullah for a spiritual healing. She was given a treatment that involves pouring water from a turtle shell over her head. The parents swear she improved after that.
It seems that both doctors and parents first tried every other diagnosis they could find; Harissa has been treated for many things. Although there is a family member who died of TB, there has been a studious avoidance of mentioning him or making any link to Harissa’s symptoms. A gaping huge blind spot in the middle of their field of vision…
Now that TB has been deemed the final diagnosis, their desperation is complete; prayer and ritual are the only way out. We convinced them to bring Harissa back to hospital, but I get the feeling the parents are only placating us – Oh alright, if you really want to give her medicine … They have asked to take her out of hospital one day a week for three weeks for the turtle shell treatment, so now it’s our turn to be placating: as long as they also let Harissa take our medicines, and try to feed her more, we don’t mind.
It’s proving quite a battle to get our kids with TB to gain weight. Harissa is not the only one. Kids can be fussy eaters at the best of times, but when they not only have the wasting caused by the TB itself, and no appetite due to illness and medication it gets dire. So dire in fact that the whole system can crash, like Yusuf’s did.
14-year old Yusuf looks like a nine-year-old and has been on our MDR ward for months. He was the only one there and very lonely. He is underweight, has little appetite and doesn’t like the hospital food. His mother is too sick and his father too poor to be with him often enough to provide regular meals that he likes. He seemed to be getting worse rather than better for being hospitalized so long, and if he wasn’t actually losing weight he certainly wasn’t gaining any. We started doing a home assessment to see if he couldn’t be discharged where he might be happier. And then suddenly he nearly died on us – went into respiratory distress, lost consciousness, his heart was failing. No discharge any time soon for him now; he’s on oxygen and can hardly walk. But we still can’t get him to eat enough, despite using star charts, positive reinforcement and the promise of rewards for gained kilos.
Which brings me to Plumpy Nut. Yusuf hates it; poor Harissa vomits it out every time. Many other kids won’t eat it either, they don’t like it. Plumpy Nut is a therapeutic food prescribed for underweight or malnourished kids. It’s made of nut paste and sugars and other good things, high in calories and nutrients, and it resembles peanut butter in taste and consistency. African children tend to love it, they gobble it up, lick the packages clean. Many Tajik children however, can’t stand the stuff for some reason. We’ve tried all sorts of things, mixing it into warm milk, spreading it on bread or biscuits, combining it with other foods, but we just can’t make it palatable. We’ve even decided to change our pharmacy order to a different kind of therapeutic food, as our supplies of Plumpy Nut may possibly expire before we can get it into the kids!
Aziz who is four, hasn’t tried Plumpy Nut yet – he has TB meningitis and is so sick he has to be fed through a tube. His father is illiterate and unemployed at the moment, but he clings to our words as his only hope and does everything we suggest. He is massaging Aziz’s arms to help the contractures developing there. He spends a lot of time at the hospital so Aziz won’t be alone. He feeds him water through a syringe. It is heart-warming to see. Grandfather is also there, sitting cross-legged on the other bed, his traditional four-sided black-and-white hat complementing his full white beard. He doesn’t say much, he’s just there. I imagine that Aziz, sick and little as he is, is being healed by that, just as I can see that the whole family is grateful we are here.
All patient names have been changed