WARNING: This is long and it is ranty.
As you may have seen from my facebook updates, 7 year old Rachel is in dire need of support for her nutrition. Once a healthy chubby baby (albeit, with cerebral palsy), Rachel has been gradually wasting away ever since the age of 4 when she became acutely ill and stopped eating. Weighing only 10kg (1.5 stone!!) Rachel is now literally nothing but skin and bones leaving her vulnerable to all kinds of infection.
|Rachel has almost no body fat or muscle. Sorry her face is missing, I didn’t take the photo!
After a long consultation with the physio last week we decided on a course of action. Rachel needed to go to Mulago, the Uganda’s flagship government hospital in Kampala. We organised a referral to the ENT (ear nose and throat) department and transport provided by the wonderful TUSC Uganda and off we went.
We left Jinja around 6 am with a car full of children needing medical input in Kampala. We reached the Mulago by 8.30am and after navigating its maze like corridors found the ENT before 9am. I was initially pleased: although the doctor had not yet arrived, the nurses were friendly and I could see we were only 25th on the list.
|Mulago Hospital, Kampala
Furthermore we were then organised into groups and we ended up being only the 7th people to be seen by the consultant! My relief came too soon. From the look on the doctors face when we entered I realised this was not going to be an easy appointment. She started by scolding Rachel’s mother for allowing to stand beside her and not sit on her lap. “You are not the patient so I do not want to look at you! Put the child on your lap!” Poor, confused little Rachel, who has rarely left the village before, was totally confused and disorientated and did not want to sit on her mother’s lap, preferring to stand beside her. And so she started to cry and struggle.
The doctor laughed derisively at the mother’s lack of English or Luganda and reluctantly took a brief history in Kiswahili before turned to me and barking “Why on earth did you think ENT was the correct place to bring her?!”
2 referrals? A wealth of advice? The fact the child can’t swallow? None of these suffice. At my insistence she briefly shone a torch down Rachel’s throat, laughed and us sent packing to the Acute Care Unit, but not before a HIV test was demanded, then refused, then redirected to another ward then refused again….
Sometime later, we arrived on the very far side of Mulago at the ACU. My initial impressions were grim. Although the walls were adorned with brightly coloured cartoons the somehow all looked grotesque. Playing mice looked more as if they were clawing each other with sharpened talons, malnourished with black sunken eyes; Winnie the Pooh had hydrocephalus; the road runner’s cousin had his neck twisted almost entirely off.
Everywhere floppy limbed babies with eyes rolling back in their heads lolled in their parents arms. A mother lay on the floor wailing for her dying child, no one paid attention, but simply stepped over her.
Refreshingly, the doctors on ACU were intelligent, articulate and helpful. They gladly found a Swahili speaking doctor who took a thorough history and made a comprehensive plan of action. Rachel was to be admitted immediately, rehydrated, fed through and naso-gastric tube and embark on a long course of rehabilitation, which of course would involve ENT. The doctor even reassured us that since this was a low income family they would provide all the mothers meals, and find clothes and sheets for Rachel since they were not expecting to be admitted today (in Uganda you are usually expected to provide everything in hospitals from bed linen to cotton wool to washing soap to medical supplies).
|Rachel at home in Kakira
The only thing she needed, I was told was the naso-gastric tubes. But don’t worry you can get them just outside the gate.
Off I trotted, leaving Rachel and her mum waiting on a bench to be admitted. I hadn’t really realised that by this point it was 1pm and I had eat and drunken nothing all day. I reach “just outside the gate” and was directly “just down the hill” then “just to that red roofed building” then “no, this is not a pharmacy there are no pharmacies around here you need to go to Wandageya!” On seeing tears prick in my eyes, they directed me down another hill through a washing bay and over a roundabout…”No, not here, you’ll need to go to Wandegeya!”
Long story short I drove around 8 pharmacies in Wandegeya on a boda-boda before finally striking gold. Rushing back to the ward more than an hour later I found the patients still sitting there. The nurses ignored us. So I asked another one.
“Go in that room.”
“Why are you in here? Go to the ward!”
“Who told you to come here, go back and wait!”
Oh and not to mention “Well who’s going to pay the 2000 for the toilet paper and carrier bag she has to buy to me admitted??”
Finally I found an endearing older nurse, explained Rachel’s history again (as her file was by now AWOL), and explained Maama Rachel’s language problems and lack of experience in big hospitals. She smiled kindly. Then said: “Who on earth told you get a size 12 tube? This is far too big!”
It took the 4 separate bouts of trying and still Rachel refused to swallow the tube. Finally the disappeared with her and the mum into a room for 30 minutes returned and exhausted child, still tubeless but now retching and wheezing. Within minutes one side of her face had swollen to treble it’s usually side and she was struggling to breath.
Not a nurse in sight! I searched up and down the ward until I finally found a loan blue aproned women who sneered at me “Well if you’re so worried take her in there!” and pointed to the “Emergency Treatment Room”.
At last! I’d found doctors! But every individual was a hive of activities over babies who’s each breath appeared to be their last! We shrank back, not knowing quite what to do – was this an emergency enough? Should we wait or insist on treatment – until finally a doctor became free.
“Well where’s her file? And who ordered this big tube?” she demanded.
Another 20 minutes and the file was located. “Well of course she’s not getting the right course of treatment here, she was meant to be admitted to the Mwanamujimu nutrition ward!”
Leaving a trail of bitter words about the quality of nursing care being us, off we hiking to the top of Mulago hill in search of the poorly sign posted Mwanamujimu centre. But at last, we found the place! It was clean; there was a swing set out front; smiling nurses in bright blue tabards attended to each and every child.
They took one look at her file and asked “But why have you brought her here? She wasn’t supposed to be admitted here until tomorrow!”
Frustration spilling out of my every pore, they finally took pity on us, agreeing to admit her there and then and leaping into action about her hydration issues and swollen face. She must, of course, go through triage again but after more than an hour waiting we managed to sweet talk the nurses into allowed them to be unofficially admitted and kitted out with everything they needed whilst they waited for the doctor to see them.
Only one battle still remained, the door the cupboard of charity clothes was locked. “Some mothers are stubborn; they refuse to return the clothes, so now no one is given them!” Tired and frustrated out of my mind I let them know how ridiculous this was. I gave a personal guarantee Rachel would return the clothes, a personal guarantee of the original intention of donated clothing, along with a personal guarantee of what I would do if Rachel was not given clothes and well cared for on my return.
We left Mulago past 6pm reaching Jinja at 8.30pm. Don’t get me started on the farcical days the other three children seeking treatment had…just know that this is just a typical day out at Mulago.
I will keep you informed on Rachel’s progress and hopefully inundate you with photos of her new healthy self!!
PS Sorry for the lack of picture this time, I just didn’t have the heart to be taking photos of everything whilst it was going on!