HE’S not going to make it. Call palliative care.” The instruction was given in a neutral tone, as if asking us to book a chest X-ray or get a dietetics opinion. I exhaled sharply with relief. I had been the registrar looking after the boy in the bed in front of us for over four weeks, and I was at my wits’ end.
Jason was a seven-year-old boy who had a metabolic condition that caused a slow degeneration of his brain and central nervous system. There are different variations of this disease, some more treatable than others.
Because no one knew Jason’s underlying issue, or what condition he had, he was kept on “full intervention” in the paediatric ICU while we worked to properly diagnose him. This meant that everything that was needed to keep him alive, no matter how invasive or painful, was on the table, with no effort spared in the attempt to save him.
Throughout it all, his mother, Agnes, sat quietly by Jason’s bedside, occasionally placing her hand tenderly on his forehead.
The hope was that we would discover that he had something that was reversible. But as time went on, this seemed more and more unlikely. The tests may have been equivocal, but messages from Jason’s own body couldn’t have been any clearer: it was shutting down.
While he was surrounded by doctors and nurses who all wanted what was best for him, it wasn’t working. We were making him miserable. Deep down, I knew there had to be a better way. So when the consultant suggested we contact the palliative care team (Paedspal), I was both relieved and confused.
“I didn’t know that the hospital had a palliative care team,” I said.
“It’s new,” the consultant replied. “I don’t usually like giving up on patients, but have you got any better ideas?”
This story is from the 25 April 2024 edition of YOU South Africa.
Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 8,500+ magazines and newspapers.
Already a subscriber ? Sign In
This story is from the 25 April 2024 edition of YOU South Africa.
Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 8,500+ magazines and newspapers.
Already a subscriber? Sign In
OUR BRAVE LITTLE FIGHTER
Like her late sister, little Elana was born with a rare lung condition and can't breathe without a ventilator, but her parents are walking this familiar path with courage and hope
DOUBLE JEOPARDY
With his new film, The Fall Guy, Ryan Gosling put stunt doubles centre stage but how hard is it for a complete amateur to master the trade? Journalist Simon Usborne decided to find out
INSPIRATION EVERYWHERE
Irish writer Cecelia Ahern chats to YOU about writing her novels in longhand, her love of Lego and looking forward to her first wine-tasting in South Africa
THE KIDS ARE NOT OKAY
Something happened around 2010 that's had a huge impact on Gen Z, says a new book. It was the start of the phone-based childhood, and it's resulted in a rewiring of kids' brains - and a surge in depression and anxiety
HE'S ON THE BALL
Despite having no lower legs, -Grayton's prowess on the rugby field has made him a social media star
THIS ISN'T JUSTICE
A woman was shot dead by her fiancé, who said he thought she was an intruder. Now her family believe he got off lightly
THE BOSS IN CHARGE OF YOUR CROSS
As chief electoral officer of the IEC, Sy Mamabolo has his hands full these days!
HEARTBREAK AND HOPE
Relatives and loved ones share their stories as rescue efforts continue for the people still trapped under the rubble of a collapsed building in George
BLOOMING!
Shes adored by fans and loathed by haters, but like the character she plays in her new movie, Anne Hathaway says shes putting her own Joy first
SUSSEXES' AFRICAN ADVENTURE
Meghan and Harry took Nigeria by storm – but relations with the royal family remain icy