Noah survives life’s early storms

Despite facing several obstacles since birth, Noah ONeale has a fighting spirit.

When Bernadette O’Neale and her partner, Rouan Verwey, got an unexpected call about a premature baby needing a home, they had no idea just how much their lives were about to change. Noah O’Neale was born at about 26 weeks on August 24 2014.

Weighing no more than 1 660g, the weight of three bricks of butter, Noah needed to gain weight to survive, but that was only the start of the tiny infant’s woes.

Noah was also born with retinopathy of prematurity (ROP), a potentially blinding disease caused by abnormal development of retinal blood vessels in premature infants.

Bernadette, from Richwood, says Noah’s biological mother hadn’t known she was pregnant until he was born so she hadn’t received any prenatal care.

Eighteen days after Noah was born, Bernadette and Rouan became his foster parents when they flew to Johannesburg to fetch him.

“This day our lives changed forever,” says Bernadette. “When seeing him for the first time, there was so much emotion and fear. How was I going to ensure that this tiny human being was going to survive?”

When the couple returned to Cape Town, Noah was immediately admitted to Karl Bremer Hospital where he underwent kangaroo therapy – the baby is placed on the mother’s chest and kept warm by the skin-to-skin contact. The therapy aids lung function and helps to stabilise heart rate, blood pressure and breathing.

When Noah was eight weeks old, the first abnormality was spotted in his left eye, and, two weeks later, he was diagnosed with stage-5 ROP.

Doctors operated on the eye to reduce swelling caused by pressure build-up.

They also tried to see if there was any chance of saving some of the vision in his right eye. Unfortunately, the prognosis was not good, and Noah was declared legally blind.

“After all these challenges, our son is our son, and whatever challenges we endured and are still going to endure come with being his parents. He will always be loved and cared for by us to the best of our abilities,” says Bernadette.

Raising a legally blind child who has no light perception comes with its own challenges.

At two-and-a-half years old, Noah has not started talking yet, and because he cannot see, he lacks the confidence to take his first steps.

“Noah has now only started to copy words by repetition and educational entertainment. This is due to not being able to see actions and how words are rounded. Noah learns from vibrations like putting his hand on my throat and mouth.

His hearing is, however, impeccable, and there is no doubt that he understands everything said to him,” says Bernadette.

Noah also visits an eating clinic, as he has sensory texture disorder, and he sees an occupational therapist to help with his immobility.

In April, Bernadette and Rouan adopted Noah after a two-year-long process.

It has taken them just as long to find a suitable white cane for Noah to walk with.

When the Richwood Neighbourwood Watch (RNW) heard about Noah’s plight, they held a dance to raise money to buy a smart cane for him.

This is no ordinary stick: a smart cane boasts multiple features, including increased obstacle awareness.

It relays information to the user by vibrating and transmitting sound signals.

But it comes at a price – about R13 000 – and has to be imported from the UK as none are available in South Africa yet.

Rozita de Klerk from the RNW says: “Bernadette is really an amazing person who through all her own difficulty selflessly gives up her time and whatever she can give to help the next person. Noah is a lucky boy; he will steal your heart.”

Bernadette says Noah has taught them to see life in a very different way.

“Our entire outlook has changed. Raising a special-needs child has taught us a special kind of patience and understanding. We have adjusted our lives to accommodate his needs and to ensure he gets whatever it takes for him to grow, learn and live as normally as possible. We all know he’s blind, but he doesn’t. He just knows he does things differently.”

* The Richwood Watch fundraiser dance will take place on Friday November 18, at 7pm, at the Richwood community hall in Richwood Avenue.

To donate to Noah’s smart cane or to buy tickets to the dance, call Rozita de Klerk at 081 047 1462.

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