Personal Stories

My Experience Of Spinal Tuberculosis During & After Pregnancy – The Unknown Story

   

esosa

By Esosa Ikolo

What a privilege it is to be able to laugh, walk and feed oneself easily. It’s often said that you don’t appreciate what you have until you lose it. The story I’m about to tell is a true example of this saying.

Just like any other first time mum – to- be I was excited when I discovered I was pregnant. As days passed, so did I eagerly look forward to becoming a mum and holding my baby in my arms but unfortunately, this feeling soon got substituted.

Around the 7th month of my pregnancy I became very ill to the point that I barely could walk. “That is common of pregnancy now”, do I hear you say? Well you are quite right, but had the pain been that which I had heard about from my ante-natal classes or the experiences of other mums including mine, I might have braved up and simply put up with them. But this was different. I had pains in my chest and also my back which degenerated into breathlessness to the point that I dreaded coughing and even laughing. So with this, I knew I had to ditch the pregnancy myths I had come to live by and seek for help.

So it was that I became hospitalized for weeks prior to my due date. After some initial examinations, I was told by the doctor that he suspected I was suffering from Tuberculosis and before he could finish his sentence, my husband and I shut him up in his tracks telling him, “that is not true!”.

How could it be when I had not really coughed nor had I coughed out any blood in my sputum? I also had not lost considerable weight so what did he mean by I had TB? My gynecologist did well to ignore me and ran some test to confirm his suspicion. Luckily they all came back negative and all I could mutter was, as if….

Anyway days rolled into weeks and my condition did not as much as improve one bit but I continue to be wracked with these unbearable pains and because my doctors could not diagnose the cause of my ill health, they literally wrote off my case and dismissed it as pregnancy induced. With this, my feeling of excitement to see my little one born, changed drastically to desperation! I wanted my baby to be born so I can be well!

On the 30th of August I delivered my son against all odds and could I even lift him? The few times I stubbornly succeeded in picking him, I couldn’t put him back in his cot and I won’t mention what attempting to change his nappies did to me. My pains post delivery went up exponentially and left me wondering when after child birth the doctors advised I would begin to feel well. I remember crying out to God one time asking him why me and if I had not suffered enough?

Exactly two weeks later, I noticed my legs were giving way when I tried to walk. I could physically see jerks and quick movements in my legs and in no time I could not walk at all. Following this observation, it was indeed a no-brainier for me to be rushed to hospital in an ambulance where an x-ray was done on my trunk revealing that four of my vertebrae had collapsed! After this, I was booked for an emergency surgery the next day.

Given so much harm had been done to my bones, the doctor had to take out the collapsed and decayed bones and supported my spine with two 6mm titanium rods. Post surgery, my surgeon said he suspected Tuberculosis, again! It was seemed as if these British doctors did not have anything better to say about their test results or that they were taught to always suspect TB whenever a black person has the odd complaint of chest or back pain. This time, I did not waste time in educating this doctor. I told him of my roots in Nigeria, which is TB prevalent. And when that did not do it, I went as far as telling him that Biology was my favourite subject at school which taught me the main symptoms of TB so if I had TB I would gave known – thank you very much! And truly, where is it known that TB affects places outside the lungs? These were my thoughts amidst all his other medical jargons and reasons why he suspected TB.

Results of the test carried out on a tissue sample taken out from around my spine during surgery indeed showed I had TB! Regardless of what the lab results showed TB, I still stupidly refused to believe that TB found its way from my chest to my spine of all places. After all, if my Biology teacher did not teach me that and if the 28years of being born and bred in Nigeria did not educate me either, why should I believe the words of an English doctor who cannot appreciate this black man’s disease as much as me?

As it was a major surgery I was hospitalized for a while and was only discharged after 3 weeks because my doctor was sick of seeing me weep as a result of missing my then 5weeks old baby. In fact the 2nd picture shown is me sobbing bitterly when my good friend Ada brought my baby to see me in hospital after a week of being away from him. I wept uncontrollably apologizing to him for not being able to be with him.

So back to my discharge day which came after what seemed like eternity. As I was prepared to go home, I was given the strictest of orders which included not lifting my baby and sitting up for no more than 10mins. While at home with my baby, I remained paralyzed from my legs down and was bedridden for months.

I recall vividly how the few times I stood up in my bedroom to either go use the loo or sit up to be fed by my husband, I’d glance through the window appreciating people as they ‘used their legs’ to walk up and down the streets. I used to long for the day when I’d be able to do same- talk about taking things for granted!

Why have I chosen to share my story? If anyone says, oh, how can she say be so ignorant and say she did not realise that TB can be extra pulmonary (outside the lungs)? Well if you say so it means you are more informed than I was and so I doff my hat for you. Peradventure there are a few people who like me, my family members and a host of other people whom I have come to realise since I began telling my story, think the number two world killer disease called TB starts and ends in the lungs (pulmonary TB). If you are such, then this is for you!

It is said that most people have TB and don’t even know it. They don’t know because it is latent showing little or no symptoms. For some who have their immunity lowered due to illnesses or pregnancy like in my case, the TB bacterium becomes active and symptoms, evident. According to research, thousands carry TB bacterium for as long as 10 or more years without showing the symptoms and I believe this was so for me.

I believe one other thing this experience did for me is make me take my health much more seriously. Sometimes we experience seemingly little and yet serious symptoms which we overlook hoping it will go away. This eye opening incident happened in August/ September 2008 and about a year or so before I recall having terrible back pains which used to make me take off my bra even when I was out and about. And did I go to the doctors? No!! Had I complained about it perhaps I might have been diagnosed with the early stages of bone decay in my spine and spared of the traumatizing experience I suffered. Perhaps I would have had the immeasurable pleasure of being a mum to my new born baby in the first few weeks of his life.

TB affects so many places in the body including the skin, hips, eyes, spine, reproductive organs, kidney, nails and the list truly is endless. Many people are sick with TB and are being treated for other illnesses simply because the symptoms nowadays mimic common ailments. This is a reason why they go on for many years being very ill. Regardless of this challenge, if you are aware of the broad range of TB you will be better equipped to suggest the possibility to your doctor and get the right treatment.

One thing I know is had I or my doctors known better, TB would have been picked up earlier and regardless of what the first test results showed, further tests such as MRI scan could have been done right after my baby was born and my story today would have been different. Thankfully this knowledge has increased since my time but there are yet people who are unaware hence my attempt to go all out and tell my story.

Furthermore in a country like Britain where relatively fewer TB cases are seen, it makes it harder for doctors to diagnose. I remember someone told me of how he was ill for many years and the doctors did all they could and he did not get well until after 4 years of being bed ridden before he was diagnosed of TB in his bones.
Another said she was being treated for stroke plus had visited traditional doctors all to no avail. Luckily it was a doctor who was familiar with extra pulmonary TB that diagnosed and treated her for TB in her hips.

For 7 years I was not proud to speak about my ordeal nor could I tell even my few friends who took care of me the truth about my illness. I was engulfed by the trauma this caused me. I also felt embarrassed because I understood the stigma TB brought to people back in Nigeria. Infact TB was known to affect people of low living and health standards. With the initial suspicion and later confirmation of TB in my spine, I was confined to a room in the hospital where everyone including my husband was asked to wear masks and gloves if they must come in contact with me. Am I criticizing them for doing this? Not at all as they were only doing their job and trying to play safe. But tell me why I would have considered making this public information at the time? It was only after they realised that TB was not in my chest was I allowed contact with people.

Thankfully I snapped out of my delusion and heeded to the call to educate others about this untold aspect of TB and its variants.Spinal Tuberculosis (ST) is an illness I do not wish for anyone to have and certainly not a nursing mum so please be informed and stay healthy!

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Writer – Esosa is the self published author of her first book titled Not my Spine. Although she studied civil engineering, she has always from a young age, wanted to write books. Having undergone major medical illness years ago and have now come to terms with it, Esosa felt this painful experience was a good story to write about, thus bring her writing dreams to life. She is a wife and mun of two growing men of valour. She is also a self published author, a blogger, a campaigner and a motivational speaker.

To learn more please visit her website at www.esosaikolo.com/tb

For speaking engagements and other inquiries please email esosaikolo@gmail.com

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  1. Pingback: No Mobile Phones, No Apps, No Internet! Berry Dakara’s Mum Shares Her Pregnancy Experience In The 80s – Woman.NG

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