The story of me: Charnelle Herbert Year: 2000 Hi, my name is Charnelle, I made my life debut at 09h45, Tuesday the 3 October 2000. I was so excited to start my life journey, but was always feeling nauseous, my head hurt so bad! My mommy thought I just didn’t enjoy a bath, but when the fits started she realized all wasn’t well, and I slept, day and night, never ate so my weight went down from a whopping 3.85 kg to just 2 kg. Wasn’t I just the cutest!?

Two weeks into my young life the fits became very frequent, mom wasn’t listening to the pediatrician any longer, she rushed me to Greenacres hospital where doctors came to my aid very fast! After several MRI and CT scans it was discovered that I had hydrocephalus and Bacterial Meningitis. My CFC’s in my brain were not draining and my skull was under severe pressure. I needed brain surgery so that a VP shunt could be put into my head to help these CFC’s drain. Of course this procedure had been done on many people before me, but never on somebody as young as me. The next youngest aged baby was 3 months at that time and things didn’t turn out well. Already my scans revealed that I was going to be paralyzed on my left side of my body, I’d be blind and well… I’d have no brain function. Doctors were very scared and Neurons we’re flown in from Johannesburg to assist. It was a long surgery, I survived it, future prognosis wasn’t good, but I was alive.

After a few months I amazed my doctors, I was healthy, functional like any other little girl. I became a medical case study as I was the youngest living survivor without defect, a miracle.

I grew strong over the next few years. Life was good and I was enjoying it.

Then one morning, I didn’t wake up… I was found lying in my own vomit, in a coma. Again I was rushed to hospital, this would become my biggest fight for my life yet… I was 10. My pediatric shunt had become to short to drain the CFC’s into my stomach. I underwent 11 brain surgeries during the period of 2010 and 2011. My original pediatric shunt was replaced, but doctors couldn’t it get to work properly. Eventually a second shunt was put into my head. I now have a VP shunt in my left side of my brain and one on the right side of my brain. Without it I will die. Every scan became more dangerous because of the radiation and all the medications left me lifeless. It was a horrible time. I didn’t remember my loved ones, I never knew where I was, who I was, I felt so scared and alone all the time. I was hallucinating and always confused. And in pain, always in pain. Epilin took the fits away, but nothing could get the shunts to function. I was back to being a baby, in all senses of the word. Nappies, being dressed, clothed and fed. Every time they opened me up I was different, I felt different, I’d lost so much weight and was very weak.

It was a long journey to recovery, I tried my best to always be strong and smile, I just wanted to be a normal happy healthy little girl. I want to run and play and be rough climbing trees and things we all take for granted, was I really asking to much? I worked hard and under the guidance of God, fantastic family, friends and teachers I did grow strong! I defied the odds. I could carry on with my life at last and live, its all I wanted. I finished my primary school and life was good again. High school, a new chapter, but wow was I going to enjoy the climb!

Headaches are a part of my life, they come and go, I suppose its to be expected. But toward the end of last year they were becoming very frequent, daily, and then they just wouldn’t stop. I started losing vision and lost control of my eye function. I became confused and lastly my memory lapsed. I was scared, we knew what this meant. We just didn’t realize what lay in store. Upon admission we were told that my head had been opened up to many times, this surgery was becoming too much of risk for me to undergo. Doctors again predicted the worst, mom had to decide, she could bring me home and focus on quality of life, quantity was not looking good. With surgery I was going to be paralyzed, retarded and blind and of course if my brain bleeds from all the surgeries, dead. Without out, I’d die. We took a chance. My shunts were again replaced. I had worldwide prayer chains going and my doctors were excellent.

Again I defied all odds against me and walked out smiling, My victory was short lived though… Air pockets formed in my stomach preventing my shunts from draining. They blocked up again. I was admitted again and operated on again.

My doctors have exhausted options on me, they went as far as to contact doctors in Cape Town hoping they could assist, but my brain is fully developed now and the surgery that could have helped me a few years ago is no longer a option for me. They are fearful to open me up again and we’ve been told should my shunts fail again they’re not sure if they are willing to risk head surgery on me again. They are discussing hospitalization for a month or longer, whilst inserting a tube into my brain draining into a bag that will lie next to me. Last resort and doctors are skeptical to do this, would be a VA shunt, draining CFCs into my heart. It might be my only hope. They will then converse on how to fit this bag into my body, pray I never need surgery again…! Last week the headaches started again. This week the headaches are unbearable, I’m nauseous, I’ve lost control of my eyes again and my memory is lapsing. I’m scared. I see my neuro tomorrow 25 January 2018. Please pray for me, I’m 17 years old and I just want to live, enjoy matric and have a chance at life! Upon seeing my neuro on the 25th I was immediately rushed to theatre, my 3rd operation in 5 months. I suffered severe memory loss for the duration my brain was under pressure, my shunts were badly blocked again. I have very little memory of my time in hospital for my stay there. Time for healing again, home time and I can become strong again. I’m in matric and I’ve been in school 2 days, I’m missing so much, but alas… February 15 and back at the hospital… My body is rejecting my shunts, forming a cyst around the outlet part in my stomach. I had 4 major brain seizures and with each one mom wonders if its going to be the one that turns me in a cabbage. I’m scared, the pain, the vomiting won’t stop. Dr tries to relieve some pressure till I can get to theatre, but time’s running out. I am operated on again for the 4th time in 6 months, this one has left me weak, in all ways, I almost didn’t make it this time and wonder how much longer can I do this, go thru this… My prayer group on Facebook: “Prayers for Charnelle Herbert” is helping my mind cope, but my body stays weak…
8th Of July 2018 and I’m back in theatre, operation no 17, I’m 17. My body is finding it more and more difficult to recover from the operations. On going home i thought i could heal at last, i do have a matric farewell to attend soon, but things are not meant to be, discharged from hospital on Wednesday, Thursday mom rushed me back, and surgery no 18. Still have the stitches from my last surgery few days ago. Doctors have now decided there is nothing more they can do but do the VA shunt to my heart. Its big, such a big surgery, they’ve ordered all they need to perform this operation on Monday, yes no 19. Moms scared, everybody is scared, i am scared, brain, and now they going into my heart.

Now the VP shunt is my head going to my stomach and the VA shunt is in my head going into my heart. Monday 13 October 2018, attempted going to school, matric’s not going to write itself, my stomach wound has torn open, back to neuro and I’m scheduled for surgery again on Wednesday. My body keeps rejecting this VP shunt now. Drs will be removing my VP shunt and we will fall to Gods good Grace that my VA shunt will function on its own. Surgery no 20 done, I’m on the mend, now time will only tell, my body is tired, I am tired. Please Lord… Not again, please let me be healed now…

Banking Details

Bank : Capitec
Account Holder: Charnelle D Herbert
Account type : Savings
Account Number : 1282061486
Branch code : 470010

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