Counting milestones one step at a time

Wednesday, September 29th, 2021 00:00 |
Stephen Mwangi, aged seven years, has just learnt how to walk. MAIN: With his mother Teressiah Mugure. Photo/PD/Wangari Njuguna

Teressia Mugure holds her seven years old son’s hand as they slowly walk along a footpath in Mjini estate, at the outskirts of Murang’a town.

For the past few months, this has been an exciting exercise as she is happy to see the boy, Stephen Mwangi, finally make baby steps after years of waiting and intense therapy. 

Mwangi was born with Down syndrome, a condition that came along with multiple birth defects and required him to undergo several surgeries to rectify them.

He was born with abdominal hernia, defective thyroid gland, hole in the heart, sinuses and his spinal cord was deformed.

When he was born, mother and son spent three months in Murang’a District Hospital as the doctors were closely monitoring the baby.

“After three months, we were referred to Kenyatta National Hospital as the doctors at Murang’a told me they had done their best,” she says.

One of the doctors, she recalls, told her that the baby had a few months to live and she should be ready for anything.

Mugure, however, didn’t let the words stop her from ensurig her son’s wellbeing.

She opted to pursue specialised treatment at Kenyatta National Hospital as advised.

For two years, this became their second home as the doctors tried to save his life.

She says that on several occasions, Mwangi’s condition would become worse and she thought he would die. 

Surgery after surgery

At the age of one and a half years, the baby had his first operation to remove the water around his heart. Six months later, he underwent his second surgery to correct the thyroid gland.

At the age of three, he was in the theater again to have sinuses removed. The third operation was to rectify the abdominal hernia, which was done when he was three years old. Two other surgeries were done when he was four years.

Mugure says these were the lowest moments of her life as she was not sure if the baby would come out alive whenever he went to theater for a surgery.

She, however, says the major heart surgery that Mwangi was to undergo was postponed after the doctors confirmed the hole in the heart was closing by itself and the operation might not be necessary.

“The heart is still larger than normal the size, but I was told it could be okay  in a few years,” she reveals.

Mugure shares how raising the child has not been an easy task, especially after her family abandoned her.

“After his birth, the father left me claiming that in his lineage, they don’t sire such children,” she recalls.

Additionally, the death of her mother in 2017 dealt a huge blow to her as she was her sole comforter and she had no one else to lean on.

“At times, I felt overwhelmed and suicidal thoughts would creep into my mind. But I fought them off,” she reveals.

The stigma associated with children with physical disability, she says, is high and some people see the child as an outcast.

“Some people told me to dump my son somewhere for him to die as he would never be like other children, but I did not listen to them,” Mugure says.

The condition of the baby demanded that she remained indoors to take care of him and thus could not go out to look for casual jobs.

This made her rely on well-wishers for food and money to take the baby for check-ups and buy him medicine.

Remaining hopeful

“A local church also offered to supply me with food stuffs and this has been of great help to me” she adds.

However, while many people sympathised with her and supported her, there were others who ridiculed her accusing her of using the baby to extort money.

“I have spent close to Sh10 million on his treatment all which came from well-wishers” she says.

Mwangi also survives on a special diet prescribed by the doctor to help boost his immunity.

She says that unlike some parents who hide their challenged children, she opted not to do it to make the society embrace and accept such little ones.  Mwangi’s elder brothers are also fond of him and they bond well. 

Though he has achieved a milestone, Mwangi is still undergoing speech therapy to help him talk.

The mother says he is yet to utter any word coherently, but she is hopeful he shall be able to speak soon.

“We go for regular clinics for the doctors to assess his progress, and I am hopeful that one day he shall be able to talk and do things like any other child,” she says in ending.

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