Mother’s reality of children born with disabilities
Mbeyu Chiguba has been bed-ridden for all the 11 years she has lived. She is visually impaired and she cannot talk or walk by herself.
From her appearance, it is clearly she has suffered a stunted growth. At 11, her tiny frail body appears more like an infant.
Mbeyu’s story sums up a case of a family in Takwa area of Likoni that has been locked up in a misery of multiple disabilities.
Her younger brother Kombo Chiguba, four, is entangled in an almost similar predicament, although the family says Mbeyu’s case is worse off.
Then there is their other brother- Zuma Chiguba nine, who is also visually impaired.
Their mother Kadzo Mangale says such is the crisis that has bogged down her family of six children, three of who were born with disabilities.
Ragged mattresses
“I am stuck in the middle of many challenges. The three children have disabilities.
I don’t know why but unfortunately this is the situation I just found myself in.
I cannot run away from this because these are my own children,” explains Kadzo.
An aura of abject poverty is what welcomes visitors at the family’s home. A dusty and stuffy home dotted with patches of moist corners defines the homestead where the family lives.
In one corner of the floor are thin-layered pieces of old and ragged mattresses on which the children sleep.
Kadzo says the family which initially lived in Mariakani, was allowed to temporarily occupy the incomplete structure by a Good Samaritan who had contracted her husband for some masonry work.
“Floods destroyed our house in Mariakani in 2018 and we could not salvage anything from it. Everything was swept away.
In the process of his construction jobs my husband was given these rooms and we moved in last year,” explains Kadzo.
She says an endless chain of predicament started stalking her family immediately after the birth of her second born daughter Mbeyu- in 2009.
Battle complications
“Immediately after she was born I noticed she had a small swelling at the right hand side of her neck but I did not take it seriously.
However about two weeks later, a neighbor noticed the child had a problem with her sight,” she says: “We took her to Coast General Teaching and Referral Hospital (CGTRH) where they discovered complications on her head after performing a CT-scan and referred us to Port Reitz hospital for physiotherapy.”
Kadzo says her daughter’s head kept on bulging and when they returned to Port Reitz she was referred to AIC Kijabe Hospital where a surgery was performed and a catheter was inserted from the right side of the head throughout to the neck all the way to the chest to drain what medics said were fluids from the head.
“The catheter appeared to have caused more and more complications since in most cases she suffers seizures at night and we are worried.
She has now lived with the catheter for eight years now and doctors say it is supposed to be removed but that again requires money which we don’t have,” she explains.
While the battle with the complications lasted the third born Zuma Chiguba was born two years later after Mbeyu’s birth.
Again, the boy was visually impaired, afflicting further anguish on top of the already unsettling family woes.
Kadzo, however, says despite the lack of vision, Zumba is incredibly intelligent and has photographic memory.
“He is the top brains in the family. He has memorised my telephone number, something, which I struggle with myself.
In addition he can recite one to 10 even though he has never gone to school,” she says.
Five years later after the fourth and fifth born who were all okay, the sixth born-Kombo Chiguba was born.
Again at birth he was accompanied by multiple disabilities, in a case that is virtually identical that of his elder sister Mbeyu.
For Kadzo, attending to the family amidst the tribulations has been a daunting task considering that she has no stable source of income and her husband survives on odd jobs to feed the family.
“It is a demanding task, yet I have no means of livelihood. These children you see here need frequent care and caring for a bed-ridden person is such a demanding task.
You need to do all the cleaning. Now Imagine I have three children who are disabled. I can’t afford to buy diapers or even soap leave alone food.
I survive on support from well-wishers and neighbours,” explains the mother of six and adds her elder daughter Dzame Chiguba,14, has been assisting her in taking care of the family.
Cash transfer
Salim Juma, a neighbour says despite the glaring evidence of severe disability that bogs the family, the entire leadership in the area has played deaf and blind the family’s plight.
“We have tried to contact local authorities to give this case the deserved attention but to no avail.
Even the Covid-19 relief food and cash transfer have bypassed them in spite that they are a needy case. None of the kids goes to school,” explains Juma.
Asked whether he was aware of the case, County Commissioner Gilbert Kitiyo was hearing about the case for the first time and promised to follow up the matter.
“That is a case of severe disability and should be registered…is the area chief aware of it? Kindly forward the details so that I follow up,” said Kitiyo in a telephone interview.
