Ogutu’s story

Godluck Ogutu is no ordinary father; he is a father of four and a casual labourer who despite the fact that he is
co-infected with both HIV and TB, shoulders the burden and responsibility of solely taking care of his children after their mother who was also living with
HIV left him to continue with the responsibility of raising and taking care of the children.

On a visit at the Kitengela Health Centre, I was surprised to see a man coming out of the consulting room carrying an
infant child in his arms, a huge envelope and two young children clutching protectively at his shirt. At first, I thought my eyes were playing tricks on
me but it was true, before me was a man who had brought his child to the clinic for ante-natal care. I double checked on my camera to see if I had captured it
right and it was all there.  I stopped what I was recording and sought Nurse Grace for more information concerning the
man with the three children and that is when I was introduced to Ogutu who told me his story afterwards.

Ogutu and his wife like all couples have had their ups and downs and once when this happened, they separated for close
to a year after which they resolved their difficulties and came back together. After a while though the wife realised she was pregnant and she enrolled at the
health centre for ANC. At the centre she was offered the whole package which included HIV screening, apparently she tested sero-positive and she hid it from
her husband. She refused to be enrolled to the PMTCT program and carried on as usual with her life.

During this time Ogutu became sick and he went to hospital where he was screened and found to be living with the virus.
He was effectively put on ART because his CD4 count was quite low. Shortly after his wife delivered a baby boy and though her condition had deteriorated
drastically she adamantly refused to be put on ART and left for her village. Ogutu who had been attending support group therapy sessions decided to take
charge for the sake of his newborn son. The boy had been put on ART but because his mother had left with him and considering the attitude his wife had towards
medicine, Ogutu travelled to the village to take his son. He came back with the boy and left his wife at the village.

Currently Ogutu has been struggling to balance his days which consist of going to work and taking care of his
children, attending TB clinic for DOTS because he tested TB smear positive and occasionally taking his child for the regular and recommended clinic.

Ogutu says the love he has for his children is what motivated him to do what he did and what he is doing. He has been
attending regular health talks at the Kitengela Health Centre and knows the importance of adherence. Despite the fact that he is a potential risk to these
children by virtue of his Tuberculosis infection, Ogutu refuses to delegate their care to relatives believing that they will not get the necessary care and
attention that they deserve. Besides he says that his eldest children are attending school in Kitengela and they might miss out on school if they have to
go to the village.His children have not been screened for TB.

 

Unfortunately in Kenya we lack an organized system of social welfare programs and child protection systems despite the obvious need. Ogutu’s is just one of many experiences that is happening especially in these days of HIV and AIDS.  There is need for the government to address this need and respond to families living with HIV through
the provision of temporary social welfare programs to enable people like Ogutu finish their treatment without being a potential risk to their children.  With child protection systems, policies and services  will be set up that will support the prevention and response to potentially related health risks

IN this case children can temporarily be taken to foster care and guardianship or charitable children’s institution for the duration of the parent’s treatment course,
especially if the parent is suffering from a potentially infectious disease like Tuberculosis. Under the Children’s Act 2001 children have a right to be
protected and not exposed in a manner likely to cause unnecessary suffering or injury to the child’s health or seriously affect his or her well being.  Under this

KEVIN’S STORY

KEVIN’S STORY

Kevin is no ordinary child, he has had to go through a lot of pain in his thirteen years and probably he will continue to suffer if the necessary interventions are not carried out as soon as possible. He was born with the HIV virus and has been battling with unending Pneumonia infections ever since he was four months old.  In 2001, Kevin was diagnosed with tuberculosis which was treated however in 2010, the Tuberculosis recurred. In between this period he also had several pneumonia infections. The first time he was put on anti TB treatment, Kevin started developing complications which have seriously affected his young life. He lost his eyesight from unexplained reasons.

At first he could see blurred images and he was always complaining of a headache but eventually his eyesight completely failed him. His sense of hearing too was not spared, Kevin was affected and currently he can only hear partially in on his ears and you have to really shout for him to slightly hear you.

He has always been complaining of chest pains and headaches and whenever this happens, the doctors always diagnose him with pneumonia with the most recent case being in August of 2011.

Kevin’s father abandoned them when his son’s condition got worse leaving his mother to take care of him and she has left no stone unturned in her quest to find a more helpful and lasting solution. She enrolled him in a school in Meru where he was learning Braille but the school was very far considering her son needs constant care. She is now in the process of transferring him to a school in Nairobi that has a special unit for special children.

“Kevin has been attending regular clinics at Kenyatta to find out why his head is growing bigger.  And I was told that his head has filled up with water,” his mother points out.

Kevin has hydrocephalus (swelling of the brain as a result of cerebral spinal fluid building up in the central nervous system which causes the fontanel to bulge and the head to become larger than expected). Could this be a direct result of the drug interactions?

Like in adults, TB in children is becoming a major infection in children who are living with HIV and can result in childhood deaths even in children who are not infected with the HIV virus. Sadly in Kenya the diagnostic systems are still not up to standards and many children end up misdiagnosed at the first screening. When taken to hospitals with TB symptoms, children get treated for other chest infections such as pneumonia, asthma and bronchitis, something that fuels the delay in treatments.

With his history of tuberculosis, Kevin’s constant pneumonia infections should be taken seriously considering the facts that he is always complaining of chest pains and that he has had a recurrence TB infection twice. This however is a long shot!

“Sometimes it is so hard for Kevin he cannot sleep well because of the pain especially at night,” says the mother.

If only more funds could be invested in pediatric diagnosis and treatment programs, children like Kevin would not have to suffer or undergo the pain that he is facing every other single day of his life. Failure to do this will result in more TB deaths in children, something that can be avoided because Tuberculosis is curable.

TB – the myths that surround it

Over a century later after Tuberculosis has been in existence, it is still enshrouded in myths and misconceptions especially in the rural areas of Kenya. This has led to TB patient to delay in seeking treatment while others misdiagnose themselves putting them at a higher risk of developing the deadly strain of Tuberculosis that is multi drug resistant TB or MDRTB.

During a field trip to Wote in Makueni, the thing which came out strongly to me is that despite the successes achieved in TB advocacy in the area, communities still need to be sensitized on TB awareness its primary cause and mode of transmission.

In this area it is interesting to note that people are still not fully aware of TB’s mode of transmission.  For most of the residents in the area, TB is caused by witchcraft and cold. It is not uncommon to find mud and grass thatched huts with no windows or any opening besides the door. This measure which is meant to keep the cold wind away from the family has and can be very dangerous in the long run because it fuels rather than control the spread of TB.

Inside the hurts it is naturally dark that you cannot see your hand when you close the door even during the day. Besides this the huts are stuffy probably due to the fact that there isn’t a fresh flow of clean air. This environment is conducive for many disease causing agents and if not addressed or measures taken up to enlighten, educate the people then TB cases will not stop in the area and cases of re-infection will also increase.

Witchcraft is also believed to be a cause of Tuberculosis in the area. Most residents will therefore go to witchdoctors to break the evil spell and heal them. It is not uncommon to find TB patients taking local herbs and remedies alongside the conventional anti- TB regimen for psychological effects.

KANCO through local groups like the Wote Youth group have been conducting TB awareness campaigns and has been supporting them to advocate for TB and do TB related activities such as patient support, defaulter tracing, and community sensitization.

One of the people who has directly been receiving assistance from this group which does TB advocacy at the community level is Mutheu*.  At first when you look at her you could easily mistake her for a young girl in her teens, however, she is a mother of four and her story is as sad like all the other stories.

She was just an ordinary homemaker who took care of her family in their family home. Her TB first manifested as a cough which she dully ignored despite advice from her peers to get treatment. She thought maybe it was a result of the hard chores such as carrying firewood and water on a hilly terrain that was causing her to chest pains and the cough. However with time, the symptoms did not go away and so she went to the next best remedy that she could think of, and that was local herbal remedies from the local herbalist or witchdoctor because to her and her husband, she had been bewitched or looked at with an evil eye.

This too did not bear any results because she continued coughing, finally though she was taken to hospital where she was examined and diagnosed with Tuberculosis. After completion of her treatment, her husband blocked all the windows in their house because to him his wife had become infected with Tuberculosis as a result of the cold wind and the only way to stop this from recurring was to block up all the windows.

Shortly after Mutheu became sick again and this time she was tested for her HIV status and she was found to be HIV positive. She lost weight was bedridden; she could not walk on her own and had to be supported. Unfortunately for her the Tuberculosis recurred and she had to again take TB medicine which she did and finished successfully.

Currently she is well and living positively having finished her anti Tb drugs and has been set up a small kiosk by her husband where she sells basic foodstuffs. She is yet to fully recover but the windows in her house are still blocked.

Is this an area of intervention? Mutheu and her husband are not the only ones who have this belief in the area. Looking at most houses in the vicinity the first thing you will notice if you are observant is the fact that the houses do not have windows and if they do have then they have been blocked and cannot be opened.

This is very dangerous considering the known and documented facts about Tuberculosis transmission.  It is known that the TB germs nourish in dark stuffy areas, so what should be done to sensitize these people to change their perception? Are the TB advocacy programs not effective as such?

 

 

 

 

 

 

 

Nthenya’s experience with TB

Beatrice Nthenya is 35 yrs .Having not had the opportunity to good education she enrolled for an artisan training in dress making and was living with her husband 18 yrs when four children later in 2006, misfortune struck. Blanche contacted TB.

“It took me time to realize I had TB. Having been brought up in the rural place and married in a rural setup, we still believe bad omen like TB is brought about by other people. I am embarrassed to say that we visited many witchdoctors and herbalist. At that time my husband was working in Mombasa as a casual worker and though he was not rich, we were fairly comfortable by the local standards.

“When everything else failed, I sat back and waited for my death. It was when I got malaria and knowing that malaria is a curable disease that my husband decided to take me to the hospital and during the diagnosis and my cough and weight loss that the news of having TB was revealed to me after two days of going to the hospital. I kept the faith and took my drugs for the 6 months that was prescribed even though I mixed it with other local herbs for psychological effect.”

It wasn’t easy for Nthenya though. The drugs would make her nauseas and she could vomit all the food she had taken yet she was advised to take the drugs after eating. Again she could get dizzy so she made sure she was lying on the bed when taking drugs. She eventually finished her anti TB treatment on October 2007.

“It is over,’ she said to herself and could not hide her joy and relief when the last test results clearing her of TB was given to her.

“I am cured!”  Nthenya said with a smile on her face showing how she felt at that time.  Having gained weight from 55Kg to 60 Kg she resumed her duties as a mother, wife and continued to farm in their one acre family farm.

“My husband believed that it was the windows that caused me to have TB so he removed all the windows so that I will never have TB again. Little did we know that the nightmare was far from over.”

In February 2011, Nthenya began to cough again!

“As usual, when you are in the rural area which is far to the hospitals and their unfriendly staff, it’s the last place you want to visit unless you must” Nthenya explained.

She went through the same route that she knows best, the traditional way, because she couldn’t believe she could have contracted TB again. This time though she ended again in hospital much worse than before. Thin, stigmatized and hopeless, she just wanted to die.

“My spirit died when I was told that treatment would involve me being injected with 56 injections on a daily basis.”

It was not surprising thus when she refused to go to the hospital to start the injections.  However, after one week her last born daughter volunteered to support her through the ordeal and even offered to be accompanying her for the injections, convinced, Nthenya started her re-treatment course with her daughter to support her.

It takes 6 hrs to reach the hospital on foot. The terrain and the footpaths do not allow even the motorbikes known as boda boda to be used. She could walk supported for 20 meters and rest and after injection she could rest for one hour before trekking back home.

In her first week of treatment her husband and sister in law were there to give their support while their children left school to support her.

“I was going to the hospital for my daughter who through blackmail made me report for my injections at the hospital without failure. If she suspected that I would not go, then that day she would miss out on school and practically force me to go to hospital.” Nthenya recalled.

Nthenya finds it difficult to explain the emotional transformation she went through even though she could not believe that she is HIV negative in all the two instances, an issue the villagers had linked her with. When the director of   Wote Youth Development Project visited her with a community health worker Jackline Katambo who had been trained by them, he eventually took up my case and supported her through counseling and nutritional support after the crops had failed. She is just grateful to her daughter and the family members who have been supporting her. Nthenya says one day when she is fully recovered she t wants to be brave enough and visit the witch doctor and the herbalists and tell them the truth about Tuberculosis.

Professional stigma – a doctor’s story

PROFFESIONAL STIGMA – A DOCTORS STORY

 

Dr MM is no ordinary doctor; she combines well brains and beauty and is the doctor in charge of the districts level 2 and 3 health facilities of Makueni District Hospital where over 1000 TB patients are treated every year. It is not usual to see a doctor or medical personnel come out to speak out about their experience with any ailment and most of them prefer to keep silent. Thus it was surprising and shocking to hear the Doctor speak of her experience with Tuberculosis, especially the stigma she faced from her co-workers.

 

“Before being posted to Makueni, I was a general physician at Chuka District Hospital and I suspect it is here that I was exposed to the Tuberculosis germs from patients that I diagnosed.  With my experience as a Doctor I at first had a general idea of what I was suffering from and I was convinced it was pneumonia or some other bacterial infection. Tuberculosis though was the last thing on my mind and this is when I realized that denial is not confined to non-professionals.”

 

“The symptoms before me were so obvious yet I deliberately ignored them, I was having night sweats, fever and of course eating was a problem because I had lost my appetite and to make it worse I was coughing heavily. I diagnosed myself with bronchitis” The Doctor sadly reflects.

 

After continuously taking antibiotics for a number of weeks without improvement .Dr MM decided reluctantly to go for the TB clinic where she was referred by another doctor

The diagnosis came as a shock and disbelief.

 

“To be honest, I was stigmatized. All kinds of thoughts crossed my mind and even now after being cured, I do not find it easy to reveal that I had suffered from TB apart from for a few friends. I went through the treatment religiously not because I wanted to but because of my professional background and the knowledge I had about drug resistance. The side-effects which include nausea, numbness of legs and sight problems were devastating and humiliating.”

 

“I remembered one day I went visiting and ran out of drugs and had to lie to the DTLC that a friend needed a dose just for the night .Being a doctor, I had no problem getting that dose but it showed how I was too stigmatized to accept my state.”

 

“I chose to be picking my drugs from another district hospital more than an hour away from my station because the nurse working in that particular clinic really mishandled me at a time when I was really down before she learnt that I was a doctor. She was very quick to look at my HIV status results because of the misconception that when you have TB then you automatically have the HIV virus. Actually from my experience I suppose we health workers are actually the biggest hindrance to the fight against stigma I learnt,” she laments.
“After disclosing to my fellow Doctors here at Makueni that I had Tuberculosis, I received a lot of support from them and they would pass through my house just to make sure that I had eaten and taken my drugs. Some people are lucky that God will always provide some nice people to look after them and I had that luck”.

 

Today Dr Maina is glad that she finished her treatment and is fully cured. Time does not allow her to be full-time TB advocate but having suffered from TB she has a soft spot for any patient who is having or is suffering from TB suffered.

 

After her experience with Tuberculosis, is she afraid of working with TB patients or in a TB setup?

 

“I don’t mind because I am not afraid of Tb anymore.” She concluded.

My TB Experience

I was only 12 years when I started experiencing a cough that persisted for a long time, and I did not understand what I was suffering from.  I remember taking those bitter horrible pills, and my mother beating me when I failed to swallow them and or sometimes supervise me with a whip, to ‘motivate’ me to swallow those pills.

With time, though after going through my mother’s version of motivation, I perfected my act and would diligently remind her to give me my medicine which I would pretend to take unsupervised only to rush into the toilet and flush them down the drain. This continued for a while and like all mothers, she became suspicious of my sudden attitude towards my medicine. Without my knowledge she was carefully observing my sudden change and she carefully laid her trap.  She had noticed that I would never take my medicine in front of her, and that I would rush to the toilet to relieve myself after being given the pills. In my fickle mind my plan was foolproof and there was no way I could get caught after all she was happy I was taking my medication and I was happy I was not dancing with the cane or swallowing my worst nightmare.

My luck eventually ran out and one particular day, I did what I had now perfected, requested for my medicine, rushed to the toilet, stayed there for a few minutes did my act and quickly walked out. Unfortunately, that day, heaven was not on my side, the pills did not go down the drain when I flushed them. When I walked out, my mother walked in and before I could reach the bottom of the stairs, I heard her shouting my name.

“Serra…aaa!” it sounded as if she was on fire and I started shaking in my skin because then I knew only divine intervention would spare me. Unfortunately that was just but a dream on a sky high shelf.

I ran into the guest room which was downstairs and hid under the bed but my malicious sister sold me out and the rest is for you to conjure in your imagination. At times I wish just wish that the child laws in Kenya would have been operational then but unfortunately there was nothing like that and corporal punishment was the order of the day  and I am sure I am not the only one who had to face such punishment from their parents.

After she was done with me, she waited for my father to report everything. He did not spare me either. When I eventually managed to slip away from him, I rushed into my favorite room, “the toilet”, and locked myself inside where I uncomfortably spent the night. To add salt to injury my whole family were taken for a treat very early the next day as I languished in the toilet alone.

It took ten years for the truth to be revealed – that what I suffered from then was TB! If I only this had been explained to me then I would have been more careful with my drugs with the understanding of the effects of not adhering to treatment.

The experience has also left me paranoid about contracting TB again. I find myself taking unnecessary caution to avoid contracting TB.  I am not 12— years but still cannot stand medicine of any kind. I’d rather be sick than take pills if injections are not an option for the treatment. I am poor at adhering to any form of pills or tablets and as foolish as it sounds or as ignorant as I maybe, I can take close to a month to complete a dose of 7 days. I know it does not do me any good especially when it comes to adherence, immunity and the like but I just can’t help it.

I am sure my experience, is relived in most households because most parents do not disclose to their children sensitive health issues relating to them.  Tuberculosis still faces a lot of stigma in the society especially due to its association to HIV. The failure of parents to disclose to their children leads to poor treatment adherence. Some parents will lie to their children why they have to take medication of any kind especially anti TB or ARV drugs. Children are not counseled on the importance of adhering to drugs and as such they see it as a punishment when they are forced to take a cocktail of drugs without having a good explanation why they have to take them.

I am currently a TB advocate and what I would really love to see is the government setting up mechanisms to address the gaps in pediatric TB issues. Children have a right to be informed; they also have a right to know what is happening to their health. Withholding information in the guise of protecting them is not the answer as it ends up damaging them which at times may have a lasting negative impact on medication, like in my case. Disclosure programs in children should be rolled out to enable children understand the disease and better address issues related to it such as treatment adherence, for their own purpose as well as to educate other children whom they relate or mingle with on a daily basis.

Pediatric TB should be addressed with equal importance and measure as TB in adults and more funds invested in diagnosis and treatment of children. If these are done then I believe we shall go along way in reducing TB deaths especially in children