Mary's Determination

When Mary’s daughter was 3 years old she thought was going to die. She developed an extremely high fever accompanied with convulsions and was admitted to the children’s hospital where the doctors advised Mary to begin making funeral arrangements.

Mary with SEN Class pupil, Sakira

However, days crept into weeks, and Mary’s daughter did not pass away. And though she remained weak and unresponsive hope returned. After sometime Mary was advised that she was out danger but that she would be left with permanent physical and learning disabilities.

Mary told me “everyone looked at me sadly as if my child was ruined, but inside my heart was happy because she was not dead. I was just happy that she was alive and I didn’t care if I would have to struggle with her being disabled”. 

Eventually Mary took her daughter home. The once precocious and verbal 3 year old now lay weak on a mat unable to speak, unable to stand and still suffering spasms down one side of her body. Some friends and neighbours advised Mary not to waste her time with the child and to focus on her other ‘healthy’ children. But instead Mary spent hours playing with her daughter coaxing her to feed herself, to stand and to interact. 

Mary encourages Winnie to walk during an outreach session.

One day, many months later, as Mary was administering some medicine to her child, she told her to open her mouth up wide. And for the first time since her sickness she followed an instruction. Bewildered and overjoyed Mary called to her other children to witness. They all laughed at their mother telling her she was imaging it until lo and behold she did it again for them. “Lift up your arms!” they told her and she did.

Daily, thereafter, Mary and her other 4 children took turns doing home-made physio exercises and devising new ways of engaging their sister to talk and play. And slowly, slowly, over time the child began to regain her skills. 

Today, that child is our formidable head teacher, Immaculate. Mary describes Immaculate as the brightest and most capable of all her children. She graduated at the top of her class in Early Childhood Education from Nile Vocational Institution where she was asked to stay on for an extra year to extend her studies and mentor the weaker students. At school and in the community she is a force to be reckoned with and is the model of a strong, confident, modern African woman who still maintains her family traditionalism. Apart from an almost imperceptible limp, there is no trace that remains that Immaculate was ever “physically and mentally handicapped”.

Immaculate playing party games with Baby Class

Immaculate has no problems leading the whole school!

Mary is chairperson of Buwenda Women in Action, the locally run Community Based Organisation (CBO) through which SSF run the nursery and most importantly the SEN project. She is our community liaison and outreach coordinator and she provides counselling and mentoring for the parents and guardians of the children with disability with whom we work. 

Mary spent hours counselling Norman's mother to cope with his special needs.

When we first came to work with Mary, we did not know this story. But we were impressed from the first by her commitment, modern attitude and never-ending faith in the children and families we work with. Mary has come to be the cornerstone of our community work and is an example to mothers the world over who face the sometimes overwhelming weight of supporting a child with additional needs.

Dust

When I said I was going to write a blog about "dust" people laughed. But I'm doing it anyway!

Dust hangs off banana trees along the Budondo Road

People underestimate the effect dust has on lives! They think of it as an inconvenience, which of course it is. During dry season you cannot go along for even 5 minutes along a dirt road without your entire body being covered in a thick film of orange. Boda drivers wear their jackets backwards and wrap scarves around their faces to protect their clothing and faces but you'll usually fine they still end up with bright orange eyelashes.

Boda driver, Sam, in his "dust proof" outfit!

My foot, thoroughly dusted!

But I have a more intense objection to dust. It's dangerous!


Firstly, think about the consequences of a five year old walking 5 km to school everyday along this road breathing this in. Numerous kids in Buwenda have health complications due to dust, mainly respiratory: persistent coughs, chest and sinus infections and of course continually runny noses.

The roadside along which the children walk to nursery. Hundred's more walk kilometres to school everyday!

The dust blinds you when a truck or a car speeds past, temporarily of course. But actually, the bacteria contained within the dust can cause both simple and complicated eye infections as well as irritation. And not to mention the danger of a boda driver missing a potential hazard - perhaps a child - has he struggles to keep the dust out of his eyes!

One effect of dust that I had not ever considered before living in Uganda is this: during dry season water is scarce. Most people who live in Buwenda collect water from boreholes, the river and if they can scrape together enough pennies, they buy it from  a local tap. To ease this burden collecting rainwater in tanks or even simply basins as it rolls of the corrugated iron roofs is commonplace. In dry season, when the rains come as infrequently as once every six weeks, one would wait with great anticipation to catch it! But alas, the roof is coated with dust! And the only water you can catch is thick and dirty and completely unusable.

Okay, so that is pretty much all I've got to say on the subject of dust. But I still think it's worth thinking about!

A day out to Mulago...

 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!

Epilepsy

Epilepsy does not have a good PR rating in Uganda. Traditionally it is associated with witchcraft, madness and is thought of as being contagious. And unfortunate as it is, it’s not hard to see where these stigmas come from. 

Over and over you hear the same stories “she was okay, but then the devil got her and gave her convulsions and now she’s mad”, “he was okay until he went to the village when he was six and there someone was jealous because he was a handsome boy so they witched him and now he’s like this” and so on...

Christine's epilepsy went uncontrolled for years unfortunately leaving her with irreversible brain damage. Luckily, her parents now know where to access medication for her and she will be starting the SSF SEN class this term

It is not uncommon around both village and town to bump into the local “crazy” from time to time. I was saddened to hear that the “crazy” most local to our nursery, is in fact a man who suffers with epilepsy. “You see he used to be okay,” they told me, “but from time to time he falls down and shakes and the convulsions take him. And after some time, his minds went off and now he’s like this. He can’t look after himself and most people are scared to go near him.” It is clear to me, this man is not “crazy” but moreover the victim of preventable brain damage caused by uncontrolled seizures.  

On an outreach with Home of Hope Ministries earlier this year, we came across a local government leader who quite calmly and pleasantly told us we were mistaken and of course epilepsy was catching. He remembered fondly, with a big grin, the times when he was a boy when they took the local epileptic, who was isolated in a hut alone, food that they pushed to the door with a long stick for fear of catching the sickness. He thanked us for our “sensitization” and for correcting him on this fact, but I fear this old man’s thoughts and opinions had not really changed. 

Home of Hope Ministries Director, Edith, gives a sensitisation speech during an outreach. (Me in the middle)

Luckily, Home of Hope Ministries achieved what they set out to do that day, which was to distribute monthly anticonvulsant medication to the epileptic children of the rural communities. Epilepsy medication is free from government hospitals, but how are you to know that? And even if you know, how are you to afford transportation? With initiative like this, replicated by many organisations, many remote villagers are getting the chance to treat their children and, just as importantly, learning about the true nature of epilepsy, that is: it is not contagious; it is not the devil; it is congenital or the result of brain injury or sickness and; it is usually controllable. 

The medical officer with Home of Hope Ministries distributes anticonvulsant medication free of charge in the community

Hopefully these children will have a chance of a happy and productive future, unlike their “crazy” and isolated adult counterparts.

Communication in Small Steps

Recently I’ve noticed the communication skills of the kids in the SEN nursery  class have improved dramatically. 

In particular I love Sadi’s “story telling”. The other week there was a bird caught in the ceiling of the school flying backwards and forwards looking for a way out. Sadi repeatedly pointed to it saying “Nkoko, ki ki ki?” (“Chicken, what is it?”) shrugging his little shoulders and looking very concerned. 

The next day I came to school late. Sadi ran directly to me and pointed to the ceiling saying “Nkoko, ki ki ki?” again but then held his nose and mimed wafting. It turned out that when they arrived at school early that morning they had found the bird dead on the floor. This is what Sadi was telling me. 

Sadi using resources as a means of communication

Another time, Sadi could hear the noise of a chainsaw somewhere nearby, which is very unusual for the village where most work is done by hand. He went to investigate with TA Lydia. On their return Sadi mimed the whole story punctuating it with some words of seeing the chain saw cutting down the big tree and the man “sleeping”.  Lydia filled us in that the man had been lying down in order to get full reach across the tree. 

For a child who was up until a few months ago almost entirely non verbal with and showed no particular desire to communicate and story tell I find this development both astounding and extremely pleasing. 

Sadi tells us about his number work sheet

Then there is Destiny, 4 years old with cerebral palsy and learning difficulties. He’s still only has a few words but is showing an exciting amount of pre-verbal babble. Destiny used to sit still and passive only engaging when excessively encouraged. Now this little munchkin runs around in circles screaming when he’s excited, stamps his feet and cries when he’s annoyed and runs to greet you in the morning calling “Hi, hi, hi!”

Destiny "chats" to Teacher Christine

They might be small steps...but we’re going somewhere!