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There were cupcakes, balloons and presents – just as there should be when a child turns one. But for the family of Ayden van Niekerk from Lydenburg in Mpumalanga, it was all the more special: just five days earlier he’d been discharged from hospital after spending the better part of half a year in intensive care.
His mom, Estelle, says they kept the party small and online to make sure the little boy, who turned one on 1 November, was safe and didn’t feel overwhelmed.
“I’ve put him in a bit of a bubble because of all those months in hospital,” she tells YOU. “He doesn’t really have an immune system.”
Ayden’s party had a sailor theme and the birthday boy wore a pair of large sunglasses for the occasion, which was streamed live on Facebook.
When he arrived home last on 27 October, Ayden was still very confused, Estelle (27) says.
“His brain is slowly starting to recover in its own way and he’s still in pain. He still has muscle spasms, which the doctors say are related to his brain injury.”
Estelle and Sarel Nortjé (35), Ayden’s dad, initially thought their son choked on a piece of biltong while in his grandmother’s care. But a neurologist later determined that, although there was biltong in Ayden’s throat, it wasn’t the cause of the choking.
Scans of Ayden’s brain showed he’d suffered a devastating epileptic fit which caused serious complications, including his heart stopping and oxygen deficiency.
READ MORE | ‘It’s breaking my heart’: Mpumalanga baby on a ventilator after choking on biltong
After numerous tests, doctors diagnosed Ayden with West syndrome, a severe form of infant epilepsy. The seizures are now controlled with medication.
“We decreased his dosage a lot because otherwise he just sleeps all day and we don’t want him to spend his life asleep,” Estelle says. “When his therapy team works with him we want him to be awake so he can practise and we can get him used to living again.”
Estelle knows there’s a long journey ahead. “He’s come this far so there’s a lot of excitement but we’re really uncertain because we don’t know where he’ll be in a few months or even years.
“It all depends on the therapy and the team we’ve put together, how well he’ll work with them and how he responds to treatment.
“My house looks a bit like a hospital – we have a heart rate monitor and an oxygen monitor, a blood pressure monitor, and so on. In hospital the nurses could help us with his medication and they knew what to give him when he cried. Now we need to use our common sense.”
Estelle says her son spent most of the six months he was in hospital in the ICU.
“He was transferred to the Netcare Rehabilitation Hospital in Auckland Park twice, but each time he suffered a setback and had to be moved back to ICU. His rehabilitation team came to see him there.”
READ MORE | Hope fades after Pretoria family told baby son has irreparable brain damage
Ayden is set to return to Johannesburg in six months’ time when doctors will evaluate his progress. Estelle says the seizure Ayden suffered caused blood vessels behind his eyes to rupture, and that a layer of blood covering the membrane behind his left eyes has left him blind in that eye.
“We’re hoping they can repair it using laser therapy.”
In terms of development, Ayden is much like a newborn baby. “He doesn’t know how to sit anymore and he needs to relearn the use of his arms. As far as his brain is concerned, we don’t know how long it’s going to take, where it’ll end and what he’ll be able to do in the future.”
But he’s finally home – and that’s a start.
