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Our daughter’s 10 months of life

Losing a child is a pain that no parent wishes to go through. Even so, Hellen Chege and her husband, Stephen Cheruiyot were not spared by fate. They had been dating for seven years when in 2011 they decided to take it to the next level and seal their love.

On February 3, 2012, the couple received their first little bundle of joy. Like any parents, they were glowing in happiness. “We named her Alyana – which means a beautiful flower. She brought a lot of happiness to our lives,” Hellen reveals.

The first few weeks of Baby Alyana’s life seemed healthy and unperturbed. Everything was swift for the new parents until that dreadful day in March that year. “On March 23, Alyana started having convulsions, but we weren’t sure.

We didn’t know the cause because she never had any fever. But we could tell something was amiss since she was not feeding well.

By then, we were staying with my elder sister, Rebecca Wambui who is a nurse and who confirmed that our child was having seizures and needed to see a doctor as soon as possible,” Hellen remembers.

Diagnosis and shock

The following day, they consulted a paediatrician who examined her and referred the couple to a neurologist at Nairobi Hospital.

“The neurologist immediately ordered an MRI and the results showed that she had a condition known as Agenesis of Corpus Collasum (ACC), a rare disorder that is present at birth (congenital). It is characterised by a partial or complete absence (agenesis) of an area of the brain that connects the two cerebral hemispheres,” says Hellen.

Their hearts dropped. This was the beginning of what would be an agonising journey for the new parents. “Alyana was admitted immediately at Nairobi Hospital for about two months.

On discharge, our medical insurer paid part of the bill and we had to organise a fundraiser towards settling the soaring bill,” recalls Hellen. They were forced to sell their piece of land in Eldoret to settle the outstanding bill. This, they said, did not matter.

All they wanted was for their little angel to recover. Baby Alyana developed difficulties in feeding and swallowing and thus was fitted with an NG tube to help her ingestion. Her fragile body was riddled with regular convulsions and varied infections.

All these delayed her general milestones. Despite the draining battle, she was resilient and would occasionally smile through the pain. She was hospitalised severally and only discharged whenever she showed signs of improvement.

Baby Alyana fight ends

In October that year, Stephen and Chege still had hopes that their baby would pull through in spite of her health deterioration. She was placed in ICU at KNH. Sadly, her brave fight was cruelly halted on November 14, 2012. Her parents were shattered by grief.

As Hellen says, it was the most inconsolable heartache that she never knew existed. Although they spent approximately Sh5 million on her treatment, they would rather have become penniless than lose their only child at that time. “It was the darkest time of our lives.

We were least prepared for the eventuality. Even the doctors kept on telling us that she would be okay. We could not believe that she had gone forever,” says Hellen.

The days that followed after the funeral were excruciatingly unbearable, but they had a strong support system that never wavered. “Alyana left us, but she still lives in our hearts and thoughts. She was our first child and she will remain so. Her place will never be filled,” she adds.

Being parents again

Sad as their baby’s bliss was short-lived, their story was not to end there. “We wanted to get another baby soon after her demise, but we were scared,” says Hellen. They would later be blessed with a second baby, Amanda followed by their lastborn, Amayah.

Both were healthy and without any reason to worry. “With Amayah, we were more comfortable and not scared unlike during Amanda’s pregnancy,” she says.

No parent ever forgets the loss of their child, but Hellen and Stephen believe that the pain dulls with time. It may take years, they say, as they are still working on healing. “After the pain and agony, we are happy to be parents again to two beautiful daughters.

We always pray to God to give us strength and life to see them grow and became successful in life,” a gleeful Hellen concludes. Even though Amanda is just two years and a couple of months old, her parents keep on telling her about her late elder sister. They say she will forever be a part of their family.

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