What you need to know:
- Everlyne Cheruto lived a normal life until the birth of her second child in 1994, who was diagnosed with down syndrome. Now at age of 59, she is constantly in pain.
- Health and Science reporter Hellen Shikanda interviewed her at her home, where she displayed four sacks of pain management drugs that she’s been taking for years. Will Everlyne ever have a pain-free life?
"In the last 19 years, my world has seemed like it’s in an ice age, frozen by the beauty of what makes one a mother. Before then, I had tasted the joys of motherhood and attested that it was good. For 14 years, I had been a mother of a boy whom I adored with every strand of my hair. My first child enjoyed the privilege of being the only one that our (my husband and I) attention was drawn to.
A hiatus of more than a decade was enough to think and prepare for our next child. We longed for him. When we realised that our first son would soon have a sibling, our life brightened like the colours of a rainbow.
For nine months in the year 2003, I carried my son with interminable grace, overpowering favour, devoid of the complications that sometimes come with pregnancy.
Tens of prenatal clinics later, I walked to Kenyatta National Hospital (KNH), heavily pregnant, happy as a duck, with the hope that the November 25, 2003 clinic would be my last.
It was my last, only that I thought I would walk in and then go back home to wait for the pregnancy contractions and the pain that comes with those. I was energetic, ready to get the new title — mother of two.
My plans did not align. Despite not having any form of pain or contractions, the nurse on duty told me the time was up and going home could only mean that I was willing to endanger my life and that of my child.
That caught me off guard, so I chose to stay because only a person who cares less can ignore a doctor’s advice.
I was booked into the maternity ward. I sat on my bed watching the free semblance of a movie that happens in such places. I knew that any minute my turn to unleash my talentless theatrics would come. I waited, and waited. The nurses then decided to induce my labour.
I sat on the maternity bed letting them do their best to bring my child to the world. My labour became a real world labour, throwing fits of an unusual aura. It did not feel like the path I once trod on 14 years ago when I had my first child. The doctor came to check on me and added more medicine to induce labour. Pain found a home in my body. It overstayed. With every pang of pain, it felt as though my uterus wanted to leave my body to let the newcomer stay.
At 11am the following day, the hour of reckoning came and I was quickly wheeled to the labour ward. I gave birth vaginally. That meant that I had to use every ounce of energy left in me to push my baby. The baby did not come out easily. In the process, the nurses quickly took a vacuum and pulled out my baby. I had never seen that in my life. Our baby finally came out of my womb.
Like most babies do when they first set their eyes on the world, mine did not cry. He was immediately put on oxygen but he remained still.
When he was still being checked by the doctors, a piercing pain ran through my body. It started from behind my back all the way to my behind. I rotated, following the pain with my head as if I’d catch it and unplug it from my system. I told the doctors in the room but I was ignored. They told me that I would be okay. Okay? Okay?
I rested for about an hour and was given my little bundle of joy. My time in the labour ward was up and I had to be transferred back to the main ward. My baby remained as calm as a stone and he breathed without a fuss.
I noticed that one side of his head had elongated, I presume, that was the part that the vacuum had exerted the most pressure.
My pain, like charged demonstrators, did not cool down even for a second. I told the nurse once again and she told me to remind the doctor the following day when he came for the ward rounds.
I did as instructed. The doctor wrote that down, looked at my child, tapped his tiny feet and he did not say a word. One, two, three, four days later…I stayed in that ward in pain without getting the medical attention I hoped to get.
My son and I were moved to a different ward. I still remember the ward’s name; Kawangware, probably named after the run-down estate that sits between the posh Lavington Estate in Nairobi and Dagoretti.
The ward lived up to its name. There, everyone who could not afford to pay for their maternity bills was crammed up.
Getting a bed was a privilege. The mantra ‘sharing is caring’ was loud in that room as one mother had to share their space with another. I was not lucky to get a bed. That night, and part of the day, I slept on the floor, with my baby by my side. The next morning I was discharged from the hospital, grateful that I did not stay long to endure the coldness of the floor backed by my pain and the worry that my child had not even squealed.
I still can feel the pain I felt when the nurses used the vacuum to help me deliver.
By the time I got a nod for discharging, my chest area was painful. I can’t remember what drugs I was given but my breasts, despite being a new mother, remained dry. My husband bought Nan, an infant formula milk. My child’s weight went down from 3.3kgs to 1.8kgs.
From experience, I knew I had to tie my stomach to restore it to its original shape. That did not materialise. Every time I tried to, pain overwhelmed me so I let it be.
I went to my village in Bungoma with my child. When my mother and aunt looked at him, they told me that he was not okay. I took him to Bungoma District Hospital for diagnosis and I was advised to go back to KNH. There, he was diagnosed with Down Syndrome and together we started our occupational therapy journey. I had three sessions every week, which cost me Sh150 each. I went for the sessions for about four years and by the time I stopped, the amount had shot up to Sh700 per session.
My back pain did not fade even for a minute. I went back to KNH for diagnosis and was subjected to a magnetic resonance imaging (MRI) scan. I was later enrolled for physiotherapy sessions. I wasn't told what went wrong. That, coupled with different pain killers, did not cut it — my pain was there to stay. I even underwent traction sessions. For that procedure, I was put in a machine, measured my weight and after that, the machine pulled my legs in a bid to put my discs in the right place. I dropped KNH for another hospital because of the treatment I got there.
Before I left for the new hospital, I had been introduced to a corset, which was a must-have in my wardrobe. It wasn’t an ordinary one but one that helped ease my back pains. It cost Sh5,000.
I had a hotel business that I had to stop running because of my incessant pain. In 2009, I became officially bedridden. I was advised to buy an orthopaedic mattress. Anytime the pain started, I could not bear it, only a strong painkiller would help, and that meant going to hospital.
I now know more than 500 types of medicine and I can tell what works for me and what doesn’t. I used to take six tablets in the morning and another six in the evening. This introduced ulcers to my body and that meant an extra dosage of drugs. To this day, I have about four sacks of used drug cases stored since 2014.
I have had more than 30 X-rays so far, an endoscopy, an electrocardiogram, which assesses my heart, as well as kidney tests.
There was no anomaly in my body, except for the pain. In 2013, we resorted to having a fundraiser that would facilitate my travel to India for better diagnosis. We managed to get Sh730, 000, which was supplemented by my husband’s insurance fund. The following year on January 10, we met the surgeon who was to operate on me with the hope that the pain would completely go away. I had an overall body test and everything was okay. The next day I was booked for a surgery that lasted about 14 hours. It is in India that I first got a proper diagnosis for my condition — degenerative disc disease.
The Indian doctors helped in managing the pain and tried to help me stand and even walk. I knew that God had given me a second chance. My husband, who accompanied me to India, was hoping that the pain had completely gone. We stayed in the ward for about 11 days and then went to an apartment to finish the physiotherapy sessions.
We came back home after about two months, on a wheelchair and constantly in need of adult diapers.
It took me two years to walk again, and I thank God, but, sadly, the pain lingered. 2017 was my best year because the pain subsided on most days. I went to another hospital near Karen, Nairobi but I wasn’t helped because the doctor advised against an MRI since I had metals on my back that could’ve caused an MRI accident.
By this time I had also developed arthritis, pressure, goitre and the bigger thorn in my flesh –the back pain.
I had overdosed myself about 10 times and that only made the situation worse. I was not lucky to get an enduring house help. My baby was still young and needed attention. I, on the other hand, had unbearable pain that made me scream my lungs out every time. One time I became partly deaf and dumb because of the overdose.
My husband retired in 2019 and that meant that I had no luxury of a medical cover. To this day, it’s only well-wishers and friends who help us with buying the drugs. This pain has taken all the money we ever had. When my back calls for a drug, I have no option but to get it. We had a tractor and pick-up that we sold to cater for my medication. I can’t do it anymore, our bank accounts are empty but my pain has no ear to hear when I tell it to shush without drugs.
My stomach is now sensitive to drugs. I wish KNH was considerate enough when I told them at first. Is it the vacuum they used that caused me all this pain?
I was blessed with another child after my second one and I had to undergo a caesarian section to deliver him. He is now a Form Three student. My second son, now aged 19, has never called me mum even once, but we taught him the basics of language, which he understands. We took him to school but he was always at risk because of frequent convulsions. He has never benefited from government services for persons with disabilities. We don’t know how to get those services. Music livens his life. I wonder what he could have been if he wasn’t the way he is. I adore him regardless, I am his mother.
I wish my pain away. I can’t remember what life was without pain. I don’t know any other life but one with pain. If pain had ears, I could talk to it to go away.”