Rant!

I will apologize in advance because this post is more of a rant than an informative post.  Both Sarah and I had a tough week last week; we both had moments of extreme frustration and upset. We had 8 deaths, 4 of whom were children less than 28 days old (neonates). I saw 5 children with severe malaria, 4 needing blood transfusion, and 1 child with cerebral malaria (malaria affecting the brain) and convulsions.  7 patients ran away because they were unable to afford the treatment and some because of the misconceptions I will discuss in this post.  Of these upsetting cases some were particularly heart breaking and it is those that stick in my mind. Sarah beautifully wrote about 2 cases on her blog (click here to read), and here I will write about some of the others.  The running theme amongst these cases is that the deaths may have been avoidable with some parental education.

In Uganda, parents associate 2 medical interventions with death. They believe these interventions kill the children as opposed to whatever illness had made their child unwell enough to require the intervention. They are:
Nasogastric tubes (a tube inserted through one of the nostrils into the stomach that can be used to monitor the stomach contents but also to feed children that are unable to feed. This tube passes through a natural orifice and although the initial insertion is uncomfortable for the child, it does not cause any pain or distress once it is in place)
A child being commenced on oxygen

For the last 4 weeks I have spent a significant amount of time explaining to each parents why these things are not the cause of death but lifesavers and essential for care. There seems to be an ingrained misconception about these 2 things. Death because of lack of resources, late presentation or overwhelming illness is one thing, but preventable deaths due to misunderstandings are incredibly upsetting.

One of the neonates that died this week had a gut infection called necrotizing enterocolitis (NEC). The mainstay of treatment is to stop feeds, rest the gut, insert a nasogastric tube and treat the baby with intravenous antibiotics until the gut heals.  We stopped feeds, inserted a cannula (which thankfully we had) and gave the baby intravenous antibiotics and fluids containing sugar and some of the salt the baby needed. We also the inserted a nasogastric tube (NG tube) to monitor the stomach content and help judge progress and aid reintroduction of feeds once the gut had healed.  Initially the baby improved, each day I stressed to mum why it is important not to feed, rest the gut and keep the tube in the stomach to monitor if the gut is getting better. I knew she was unhappy about the plan but there was no other way of treating this unwell preterm but to use the strategies mentioned above. After 2 days I was told by the nurses that each day they had to re-insert a new NG tube and a new cannula as the mum was pulling it out. She did not believe her child could survive with the tube in and no breast-feeding. Pulling the tubes out was her way of hoping she could avoid them going back in. What I did not realize was that she was feeding the baby when there were no medical staff around; 3 days into treatment this baby died of overwhelming infection.


The other case is a 2-year-old boy who weighed 5 kg and was on the malnutrition unit for stabilization and rehabilitation. At 5kg he weighs less than an average 6-month-old back home in the UK. After 2 weeks of intensive therapy following the WHO malnutrition guideline this boy was not gaining weight. On discussion with his mum it transpired that the little boy flatly refused the reconstituted milk containing the calories, micronutrients and fat he needed to gain weight. Whilst he would eat some dry food, he refused the milk as well as the plumpy nut (sweet-tasting calorific paste).  From his history, examination, a chest x-ray and some blood investigations, it was apparent that he had no other medical reasons to not gain weight or drink the milk, so it was decided that an NG tube was crucial as he was in fact losing weight on the nutrition unit. After an hour-long discussion with mum she agreed to have the NG tube inserted much to my delight. Unfortunately the following morning, this mum was nowhere to be found as she had ran away from the hospital with her little boy leaving me with a lot of dilemmas - should I have just left him without the feeds he needed? Would he have been better on the unit with some nutrition rather than running away? What will happen to him now?

In both these cases the mothers felt they were doing the right thing for their children and stopping the doctors from harming them.  This is a reoccurring theme; every day we fight a losing battle with parents about NG or Oxygen.  At the root of this problem is poor education and misconception, how do we go about educating such a large amount of people about these untruths in the short while I am here?   Shall I walk round my entire ward round with an NG tube in and see if that helps.  Maybe a radio jingle or a TV advert might help, either way something needs to change……