Chronicle Editor
Robin Muchetu, Senior Reporter
FOR 37 years, Mr John Stewart has endured many sleepless nights, countless hospital visits and constant medical trials as he sought a solution for his daughter Lauren’s condition, drug-resistant epilepsy.
This has, however, continued to prove his unconditional love for a daughter who he now single-handedly takes care of as he now works from home full time.
Lauren was born with a debilitating condition that has not only limited her mobility but also affected her speech and other abilities.
“She was born on February 14, 1987 at Mbuya Nehanda Maternity Hospital in Harare. Everything about the pregnancy was normal and the gynaecologist’s visits always gave a clean bill of health. On the day she was born, I was there supporting my wife through the birth and when the baby came, we noticed she had turned blue and the umbilical cord was around her neck. They unwound it and she soon got her colour back,” said Mr Stewart.
Another anomaly they noticed when she was born was that she did not give out the first cry that babies usually make but that did not worry the parents much as she would soon start suckling and was discharged.
Initially, there was nothing that indicated that there was anything wrong with the newborn.
Vaccination
When Lauren was due for a Diphtheria vaccination, she received it and ran a very high temperature. The couple did not make any connection with a serious illness as they were told it was normal for babies to sometimes get a high temperature when vaccinated.
“Lauren’s temperature was very severe as she lost consciousness and had to be admitted to Avenues Clinic where she underwent a lumber puncture to check for meningitis. She was stabilised and eventually discharged. Within the same week, she had another bout of high temperature and we went back to the hospital. She got a third high-temperature scare soon enough. Over the next few weeks, she would get the high temperatures weekly and we were in and out of hospital,” said Mr Stewart.
Concerned about the frequency of the high temperatures, he confronted hospital authorities who initially said she had picked up an infection that would clear but after another episode, he asked again and was informed that she had epilepsy, a severe form that was drug-resistant.
Hospital authorities informed him that the condition would affect her cognitively and that her life was going to be very difficult as the condition would be debilitating.
A life of medicine
Soon, Lauren started taking medication for epilepsy as she would get severe attacks with an estimated 50 to 90 convulsions and seizures daily throughout her life.
“The seizures got worse as she grew and the medication controlled it many times. Milestone developments in Lauren’s life were much slower than children her age or even her two siblings. We had no idea what the long-term effects would be and when she was a year old we moved to South Africa to seek treatment. We thought moving to a more advanced country would change our fortunes with the hope of getting better treatment,” said Mr Stewart.
Medical experts then highlighted that some children outgrow some of their symptoms with time but that was not the case with Lauren who has lived for 37 years with the condition.
Injections were administered to her arms, neck and even legs as they tried to assist her when she was taking medicines or getting blood transfusions such that she no longer flinched when she was injected.
At the age of two, the parents began to wean her off the medication as the seizures seemed to have been under control but that move turned drastic.
“Her body reacted badly, her head would turn backward and hit things like tables, chairs and the walls. She would have nasty falls and severe injuries. The doctors told us she needed to wear a helmet to protect herself from getting injured. That started a journey of more doctor’s visits seeking lasting solutions to the problem. This was Lauren’s life for most of her young life, taking various medications and undergoing countless tests,” said Mr Stewart.
Schooling and dietary needs
Lauren had to attend a special school to cater to her special needs and that took several denials from those schools as they were not trained to look after children like her. But when she turned nine, her parents managed to secure a remedial school which she attended.
Lauren also needed a special diet that improved her condition. She started a Keto diet, one that was combined with high portions of fat and smaller portions of carbohydrates and protein but this came at a cost.
“We had to travel to Cape Town from Johannesburg to have the diet started and in 48 hours the seizures stopped and she remained almost seizure-free for the next five years. Schooling became better, she began to learn how to read, write, count, colour and many more that school-going children do. The beauty of this school was that it included other learners who had marginal learning difficulties compared to her previous school, which was exclusively for children with severe learning challenges,” said Mr Stewart.
Lauren’s early years were fairly good as she was verbal and enjoyed music. She was also able to inform her parents if she was hungry or needed to go to the toilet.
She further blossomed at the new school.
Sadly, at the age of 12, her parents encountered differences in continuing with the diet as it was affecting the rest of the family; she could not eat sugar, dairy, wheat and other things.
“Back then, we never had gluten-free or dairy-free foods and it was difficult to shop around to get the right quality of foods. We stopped the Keto diet and the seizures bounced back with severe force once more. The diet entailed that we test her urine daily for acidity as it had its side effects. It worked well until we interfered with the diet. From that time, she suffered a combination of two seizures daily, some mild and some violent. She experienced 30 to 90 small ones and about 10 violent ones daily,” he said.
Mr Stewart, however, began to research on epilepsy and seizures so that he could take better care of his daughter as he and his wife later divorced when Lauren was in her late teens.
“Right up to today, it has been a case of trial and error on a medication, dietary and supplements level. She took, from a very tender age as many as five medications in one go for her severe epilepsy. Since it was drug-resistant, they constantly changed her medication.
“She went through the full spectrum of anti-epileptic drugs and whenever there was new medication doctors would try it on Lauren to see if it would work. Nothing worked and it frustrated me because all these things never worked,” he said.
Mr Stewart still lives with his daughter and is her primary caregiver. He gets assistance from Lauren’s mother and two other children when he has to travel.
He encourages her participation in day-to-day activities and says she is his biggest source of strength and hope. He further encouraged communities not to hide their children with various disabilities and said they must come out in the open and live a normal life like others. – @NyembeziMu.
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