Half paralysed and now epileptic, girl who injured brain after falling from cot looks into a brighter future

Monday October 12 2015

Daniel Wachira and his daughter Michelle Wangui at their Malindi home. PHOTO | COURTESY

Daniel Wachira and his daughter Michelle Wangui at their Malindi home. PHOTO | COURTESY 

By PAULINE KAIRU
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She opens the door eagerly, almost ecstatically. Then she sees her father and her face lights up like an amusement park. Bouncing enthusiastically, Michelle Wangui breaks into a chorus: “Daddy! Daddy! Daddy!” she sings — shouts, actually; almost too loudly.

As he enters the house, Wangui tags and hops by her father’s side, directing him towards a particular seat in the house on which she seems to prefer him resting. Immediately he sits down, she perches herself onto his lap and starts to stroke his chin with her left hand, occasionally rubbing her own cheek against his, all the while excitedly calling out to him.

She is animatedly shutting and opening her eyes as she catches up with her father. She seems generally fidgety, maybe a tad excitable. Her right hand is limp, immobile, but with more-than-ordinary effort she forces it with her right hand to do things, things like folding the fingers so that she can give a thumbs-up salute to her father.

And it is at this point that you begin to notice that half of Michelle’s body depends on the other half for everything.

Her right leg is stiff and shorter than the other and only helps support her weight while she uses the left one to hop her weight with snappy, bouncy lurches. Her hand on this side too moves with sudden zappy jerks as she walks.

On this leg and hand, she wears custom fabricated orthotic hand and shoe pads to support the structural characteristics of the limbs. These have to be readapted every now and then, in consistency with the growth of her limbs.

And all this because of a fall as a baby that altered her life completely.

WORST NIGHTMARE

Michelle is now learning to walk. All the years of being a baby are slowly falling behind her, one step at a time. PHOTO | CYLIA KATHAMBI

Michelle is now learning to walk. All the years of being a baby are slowly falling behind her, one step at a time. PHOTO | CYLIA KATHAMBI

“She was a happy, busy baby,” recalls her father Daniel Wachira as he delves into the story of the fall that left his daughter hemiplegic on the right side of her body and with epilepsy. “She was always running around, just learning how to walk as she was toddling already.”

The shy, lively, and energetic nine-year-old Michelle now has hemiplegia on the right side of her body because of that fall. The condition, which affects one side of the body, is caused by injury to parts of the brain that control movements of the limbs, trunk and face, making them weak. Generally, injury to the left side of the brain will cause a right hemiplegia and that to the right side affect the left. The condition is lifelong.

Michelle also gets convulsions as a result of epilepsy, a neurological disorder in which nerve cell activity in the brain becomes disrupted, causing seizures or periods of unusual behaviour.

She was playing in her cot one afternoon at the family home in Subukia when every parent’s worst fear happened. Then a little over a year old, Michelle loved to hop, dance and play with the support of the side panel of the crib.

Except on this particular day the door shoved open and she flew to the floor head-first from the relatively high cot equipped with a set of drawers at the bottom.

Wachira says his wife, whom we did not find at his new home in Malindi, and whom we could not reach on phone, told him that she had been roused from her chores by the sudden yelp of the baby.

“She called me from work in a panic and couldn’t even talk. I had to talk to a neighbour, who informed me that something had happened to the baby,” the father, a cell phone repairer who had been at work, recalls getting alarmed and rushing home to find his daughter convulsing in bed.

“According to the mum, the baby looked confused immediately after the fall. She would cry and go silent sporadically, and then she started convulsing. When I got home she was still in a fit.”

Wachira suspects the hinge on the door was faulty or had not been bolted properly when the accident happened. He rushed the baby to a local hospital in Subukia where she was put on medication, but instead of getting better she slipped into a coma. After two days, she was referred to the then Nakuru Provincial General Hospital.

A scan showed that her brain was swollen on the left side and doctors advised Wachira that the baby needed to be admitted immediately. She would remain at the hospital for 10 days, but even after she was discharged she did not go back to her previous bubbly self.

“After the accident she wasn’t able to walk again. Her right side was weak. In fact it was as if she was regressing. She couldn’t talk. Her speech had vanished. We had to start learning things all over again,” recalls the father.

LITTLE PROGRESS

Michelle Wangui who gets convulsions as a result of epilepsy, a neurological disorder in which nerve cell activity in the brain becomes disrupted, causing seizures or periods of unusual behaviour. PHOTO | COURTESY

Michelle Wangui who gets convulsions as a result of epilepsy, a neurological disorder in which nerve cell activity in the brain becomes disrupted, causing seizures or periods of unusual behaviour. PHOTO | COURTESY

And so they resorted to buying her a walker in the hope that it would assist her to walk again. Two years down the road, however, Michelle could neither walk nor talk properly. And when she regained her speech it was with a slur. The situation was made worse when she began suffering regular convulsions.

“She could no longer pronounce the words that she could before the fall,” says Wachira. “She would try to call out ‘mummy’ or ‘daddy’, and when she realised she couldn’t, it would break my heart to see the frustration in her little eyes,” he recalls.

Trips to the hospital become a fixture in their lives. Michelle was in and out of various hospitals being treated for seizures, and this made them move to Nakuru in the hope of getting better care for her.

Wachira recalls going through exasperating episodes earlier in the condition as they did not know how to deal with the difficulties accompanying this new, unfamiliar situation.

“The hospital was just merely prescribing some tablets which we picked monthly to lessen the seizures. After a year of seeing little progress we moved to Nakuru town, where we started seeing a specialist who told us our daughter had become epileptic, and that she should not be taking the drugs she was using,” recalls Wachira.

“When the attacks happened they would throw her against whatever was around, and that could badly harm her,” says Michelle’s grandmother Ann Wachira, who has moved to Malindi to help raise Michelle and her sister as their mother does not live with them.

Michelle’s mother, according to Wachira, walked away on the young family about a year after the incident.

“For almost two months she had been saying she missed home, and a day after Michelle’s third birthday, on October 27, 2009, she packed her bags and left,” recalls Wachira.

A week passed, then a month, and then a year. The phone calls, meanwhile, had become fewer and far between, and eventually the truth hit home for Wachira.

“She didn’t seem too eager to come back even though she kept saying she would come back home,” says Wachira. “Her promises were always followed with excuses, and eventually I accepted that she would not be coming back to us.”

Wachira says he had all along waited for his wife to show up at his door, always hoping that what he was suspecting was not actually happening. He tried to encourage her to come back to him and their two daughters, but eventually the communication waned and he gave up.

HOPE AT LAST

“It was a sad moment, but there was nothing I could do about it,” he says.

His wife, he adds, had been stressed since the accident. They were always walking in and out of hospitals because of Michelle’s regular seizures, and this affected her and her relationship with him.

“I think it was just too much for her,” he says of the stay-at-home-mum with whom he had been in matrimony for five years.

One year later he moved from Nakuru to Likoni in Mombasa. Alone, far away from home and with two toddlers to take care of, Wachira began feeling the weight of single-fatherhood pressing down on his shoulders. He had no one to leave the children with back at home because he could not afford a househelp, yet he had to step out of their rented home if they were to eat and have a roof over their heads.

“I started leaving Michelle and her elder sister — one and half years older — with a female neighbour in the morning as I left for work,” he recalls. “I would give the woman, who also had a young child, money for their meals through the day, and we would reunite in the evening when I came back.”

In Mombasa, Wachira, still fighting to better the prospects of his daughter, started taking Michelle to an occupational therapist but eventually could not afford the expense, so he stopped. When later he moved to Malindi with support from the Afya Research Africa initiative, he was able to access subsidised medical care for Michelle’s epilepsy, and thus could afford to get her restarted on occupational therapy at Malindi District Hospital.

Michelle is now learning to walk. All the years of being a baby are slowly falling behind her, one step at a time.

“She has been doing therapy since 2012 and we have started seeing marked improvement in the functioning of her right hand,” he says. “The right side of her body was utterly stiff. She could not even lift it. But now, progressively, thanks to the twice-a-week physiotherapy sessions, she is able to lift and bend her hand, fingers and knee.”

But this is not without a cost; they have been told that she has to be on medicine for the long haul. On top of the epilepsy drugs on which they have to spend Sh3,000 a month, there is the occupational therapist’s fee, which does not come cheap, at Sh1,000 per session.

Michelle with her grandmother Ann, who lives with the family to help raise the girl and her sister in the absence of their mother. PHOTO | COURTESY

Michelle with her grandmother Ann, who lives with the family to help raise the girl and her sister in the absence of their mother. PHOTO | COURTESY

SIGNIFICANT GROWTH

Since Michelle’s epileptologist, Dr Eddie Chengo, started seeing her, she has improved so much that her seizures have reduced from about three a day to one in three months.

“When I first saw Michelle in 2013 she also had extreme difficulty speaking, but that has improved significantly,” says Dr Chengo. “She now gets one small epileptic episode in three months.”

The intervention has helped her so much that she even started going to school in January this year.

“I am in Class One,” she lets out when I probe her about her school. Although she is yet to sit any exam, she knows that the other pupils sat an exam recently. When I give her a paper to write her names, she has difficulties doing so, but it is her confidence that most stands out when she holds the notebook in her left palm to scribble on it.

Michelle, whose grandmother describes her as “hyperactive”, is also apparently very neat, and will not go to bed without praying.

“She loves work and always wants to be busy doing something. She is always running around the house, sweeping, arranging things, always doing something,” says the grandmother, who, however, points out that they are very cautious about her being in the kitchen alone due to the fits.