Mother: My struggles raising a child with Down Syndrome

@Alicewangechi

In 2014, Teresiah Muthoni was happily married and expecting her fourth child and had no way of knowing the hardships that would befall her soon after her delivery.

Three weeks to her due date, Muthoni fell and broke her leg, an injury she carried all through to her delivery as doctors were apprehensive to fully treating her that late in her pregnancy.

But things would only get worse for her when her new born baby Steven Mwangi was found to be suffering from down syndrome, a condition that came with numerous defects.

Down's syndrome is a genetic disorder that occurs due to abnormal cell division that results in extra genetic material from chromosome 21, causing a distinct facial appearance, intellectual disability and developmental delays.

He had a swollen chest and his back was arched, and was immediately rushed to the nursery at Murang’a Level 5 hospital.

Mwangi also had Aplasia Cutis Congenita, a rare condition in which babies are born with the absence of certain layers of skin, making his body seem transparent.

The baby did not improve despite weeks of being hospitalised and Muthoni was referred to Kenyatta National Hospital for specialised treatment.

There, doctors found that his heart had a hole and was surrounded by a fluid that caused his chest to swell.

He also had abdominal hernia, sinuses and a defective thyroid, and was put in ICU for some time as he underwent treatment. His tongue was too big and would not properly fit in mouth which resulted to poor feeding and lessened immunity.

His future seemed bleak then and with the weak heart, the infant would constantly turn blue as he struggled to breathe.

Meanwhile, her husband struggled to understand the baby’s predicament and eventually chose to abandon Muthoni and her four children.

He told me there are no disabilities in his lineage and that the baby must not have been his. He left me when I most needed support and I chose to shift my focus on my children,” she said.

As Muthoni spent days at KNH, her children stayed with their maternal grandmother who then passed away, leaving them unattended.

At that time, her first born was 16 years old, second born was 13 while the third child was 11 years old.

With no source of finances, her first born dropped out of a boarding secondary school and joined a local day school after a local politician pledged to sponsor him.

The boy was forced to repeat classes from Form 3 to Form 1 but eventually dropped out of the day school after the politician failed to keep his word.

Muthoni’s children were forced to start doing odd jobs just to survive as she spent most of her time at KNH fighting for her baby’s life.

At one point, the child’s heartbeat was so faint that she thought he would die and she broke down crying and praying in the hospital as doctors whisked him away to the theatre.

“Seeing my child struggling was one of the hardest experience I have ever gone through. He kept getting worse. So many times I almost gave up,” she said adding that doctors then operated on the boy and removed the fluid around the heart.

Sometimes, Muthoni would get discharged from the hospital only to return a few hours later after more complications came up.

Even at home, Muthoni’s life had ground to a halt. She could not seek jobs to support her family as she could not leave Mwangi at the care of anybody else. He was too delicate.

By then, well wishers had introduced my children to the Catholic Church where they were supported and provided with food.

The first three years of Mwangi’s life was barely spent at home. He had to undergo several surgeries to correct his numerous health challenges.

His drugs were many and expensive, pushing her to start raising funds on the streets of Murang’a town as she pushed him along in a wheel chair.

Many ridiculed her as she walked into offices seeking financial support as they accused her of using her child’s condition to extort money from members of the public.

Unperturbed, Muthoni would wake up each morning and hit the road. She knew that was the only way she could raise sufficient funds for the numerous tests and drugs that her son required.

With his weak immunity, doctors advised against a surgery to correct the hole in his heart and was given drugs to help correct it and stop its swelling.

He was then put on medications to balance his thyroids while consistent therapy helped straighten his arched back.

“There was a doctor who advised me to find untilled land and be burying my son in the soil up to the chest as a form of therapy for his weak legs and I did for years,” she added.

At six years of age, Mwangi could eventually sit down and Muthoni started training him to walk slowly by slowly.

With his back still weak, Muthoni recalled that she would tie him up with a leso to support it as she helped him take his steps.

After months of training, Mwangi could stand by himself but required more time to be able to take a few steps without her support.

“Right now, he can walk on a flat surface but I can’t trust him to walk on a non-smooth area because he still walks like a toddler,” she said, noting that one of his feet is weak and too flat footed.

Wiping away tears, Muthoni happily explained how Mwangi, 9, is now able to play, laugh and socialise, albeit under her watch.

Muthoni who lives in Majoyce village near Murang’a town said the boy still requires more therapy to help him walk properly but said she does not regret the journey she has walked with him despite the difficulties.

She said many people admonished her for walking around with the child but she’d retort back that he was her child and she would not hide him just because he was different.

“A doctor who counselled me once told me to answer back to people who were mean about my situation and I have found it very helpful”.

“I got help because I did not hide my child just because he looked different. People have raised concerns that I parade my child too much but he’s a child like any other and should not be treated any different. My child is now able to integrate with friends and his siblings who love him a lot”.