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Kijabe centre of hope for babies with hydrocephalus

hydrocephalus is a medical condition that is primarily characterised by an excessive accumulation of fluid in the brain.

hydrocephalus is a medical condition that is primarily characterised by an excessive accumulation of fluid in the brain.

NAIROBI, Kenya, May 06 – The desire of every mother is to give birth to a healthy baby. But this wish is not always fulfilled as some babies are born with conditions that can be life threatening.

Whereas these conditions such as hydrocephalus and spina bifida can be detected at birth, some occur at later stages of childhood.

Most of them are correctable with early detection and correct medical treatment.

Capital FM News embarked on a 60-kilometre journey from Nairobi to Kijabe to understand the pain and the window of hope offered to children with hydrocephalus and spina bifida.

According to the National Institute of Neurological Disorders and Stroke, hydrocephalus is a medical condition that is primarily characterised by an excessive accumulation of fluid in the brain.

Spina bifida, on the other hand, is a neural tube defect caused by the failure of the foetus’ spine to close properly during the first month of pregnancy.

“In children with spina bifida the spine didn’t fuse as it should, so there is a protrusion on part of the spinal cord along the vertebral column,” Ann Mulwa, Administrative Director of BethanyKids, Kijabe Hospital explained.

The road that leads to this oasis of hope is in a desperately bad condition.

However, the dilapidated state of the road and the extreme discomfort that comes with driving on it does not shake the determination of the mothers who troop at BethanyKids daily in a desperate bid to find medical relief for the excruciating pain that their children were born with.

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After a rough drive, we arrive at the special wing with eye-catching paintings of hope and love for children.

It takes a lot of strength to see children – some newly born – hold on every little effort that can save their life.

The full weight of hydrocephalus became a reality after an encounter with a 5-day-old infant who had been brought to the hospital for treatment. One’s heart cannot help but break upon witnessing the insufferable pain that nature had visited upon such a tender and fragile life.

Hopeless as it seemed, Mulwa lifted our spirits when she whispered that there is considerable hope for successful treatment when the condition is detected as early as it had been in that infant’s case.

Unfortunately, our relief was short lived.

In the next ward lay a child who appeared to be suffering from the full impact of severe hydrocephalus and its attendant ramifications. The little boy’s head had expanded to the point where he couldn’t lift himself up no matter how hard he tried.

He lay in bed looking at us, the pain in his eyes was evident.

His mother sat beside him on the bed, looking like she was carrying the weight of the world on her shoulders and wearing a look of undiluted pain and despair on her face.

We tried to start a conversation with the young boy’s mother in a bid to understand her pain and offer her some encouragement but a clear language barrier destroyed any hope of communication.

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The truth of the adage that a child’s pain is borne by its mother was clear to all who stood in that ward.

At a nearby bed was a 6-month-old boy from Bomet.

The boy’s head was extremely swollen and had as a result caused his eyeballs to be sucked deep into their sockets. The boy had just gone through an operation to insert a shaft that would drain accumulated water from his head.

His innocence was so evident and he was oblivious of what was going on around him.

We had now simply been reduced to dumbfounded observers of the suffering that surrounded us. In another ward, we met Masara and her daughter Sumaya from Burundi.

Sumaya’s ordeal began at the age of three when her mother noticed radical changes especially with her eyes which exhibited abnormal movements.

“She was ok, she was going to school normally but she kept on complaining of frequent headaches. I took her to many hospitals but there was no progress. The situation got worse,” she recalled.

A Burundian doctor in fact diagnosed her, and even gave her eyeglasses to take care of the eye problem. However, Sumaya’s headaches got worse and she started vomiting.

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“Then I realised that her right side was becoming weak and she was getting paralysed. Her hand and leg were not coordinating. Then her mouth had also become crooked,” her mother explained.

For two years, Sumaya and her mother wandered from hospital to hospital but were only littered with a series of misdiagnosis.

It was until Sumaya was five-years-old when a different doctor in Burundi diagnosed her correctly. The doctor recommended specialised treatment that he said could only found in the UK, India or Kenya.

Sumaya was eventually referred to BethanyKids in February 2015 where she received treatment and began her journey towards full recovery. When we met her, she looked healthy and happy. Her beautiful face was radiating with hope like the rays of a rising sun.

All this her mother admired with a glowing face of appreciation.

Though Sumaya’s condition was diagnosed as hydrocephalus, Sumaya’s mother recalls her tribulations back in Burundi when her daughter’s head started swelling.

Curses and witchcraft were cliché terms used in gossip by her friends, relatives and neighbors to explain her condition. At some point, she was convinced by relatives and neighbors that her daughter was possessed with demons.

“People said many things, some said she had devils in her head and that I should go to have her cleansed. That’s why I am asking every mother who has an experience like mine to only believe in God and seek for medical attention,” she said.

Due to stigma and societal misconceptions about hydrocephalus and spina bifida, some communities hide affected children from the public. Burundi is not unique to associating such conditions with demonic spirits and curses, Kenya is also a culprit.

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“When we meet these children we know they have many challenges, some of them have been abandoned and we have just picked them, some have been rejected,” she explained.

According to Mulwa, the centre’s director, the number of children with such conditions has been growing. Most of them make it after the correctional surgeries, but unfortunately some do not.

She attributes some of the cases to poor parental services especially where pregnant women fail to take folic acid.

Others present their cases at late stages.

BethanyKids which has a bed capacity of 67 takes care of children from Kenya, Ethiopia, Rwanda, Burundi, Tanzania, Uganda, Liberia, Morocco and Ghana.

Even as we bid BethanyKids goodbye, the wish of Mulwa and her colleagues is that every mother gives birth to a normal child. Their plea is also that mothers seek medical attention immediately they realise their children have hydrocephalus or spina bifida symptoms.

(This story was written by Judie Kaberia and Dannish Odongo)

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