Real life
When the right half of little Blaine’s body stayed limp, mom Amber Benjamin knew this wasn’t just a simple case of tonsillitis. She was right…
Children only very rarely present symptoms, so it is very hard to know how common the disorder is in children, but it’s very rare.
Babies get sick occasionally. That’s what new mom Amber Benjamin told herself to calm her fears as she left her bundle of joy, Blaine, with his Ouma and Oupa and set off for the Overstrand Municipality offices, where she works as a by-law enforcement officer.
He’d had a fever during the night and wasn’t fully awake by the time Amber had to leave home in the village of Hawston near Hermanus to clock in by 7am. Oupa gave him his bottle but reported that he was listless, drank his milk and went back to sleep.
“This is odd because he is truly a busy little man, a happy chappy and a sunny child. He’s always got a smile on his little face, and he lights up every room,” reports his besotted mom.
“He had just started crawling.”
At 9.30, Blaine was awake, but Oupa noticed he was struggling to lift his head. When he tried to smile, his little mouth collapsed on the right-hand side. “I could see a cry of help in his eyes,” Oupa said. Oupa went to find Ouma and told her, “Dit lyk ons kleinkind het ’n beroerte gehad (It looks as if our grandchild had a stroke).” Since Oupa had had a stroke himself, he knew the signs.
Ouma and Oupa immediately took Blaine to a GP in Hermanus, who diagnosed tonsillitis, prescribed antibiotics and dismissed the idea that the child had had a stroke.
At 2pm the worried mom popped home to see if her little boy was starting to feel better. What she saw concerned her: “He tried to lift his head: it fell back again. I lifted his right arm, it dropped. He couldn’t move at all, and he looked so sad and panicky.”
“I told myself this is not tonsillitis. I took him straight to the Hermanus Mediclinic, where a doctor examined him thoroughly.” The first plan of action was to bring the fever down. The family was sent home and at 6pm a doctor called to follow up on Blaine’s condition. When Amber reported that the paralysis on the right hand side had not improved, they were told to come back to the hospital for a brain scan. “About 8pm we got back to the hospital, where Dr Elna Gibson was waiting for us with open arms,” remembers Amber. “By 11pm we had the confirmation from the scan that my baby had had a stroke. We were told to stay overnight in the hospital while Dr Gibson was urgently looking for a hospital with a paediatric neurologist in Cape Town so that she could transfer Blaine’s care.”
Amber was terrified. “How could this happen to my little baby? He doesn’t understand what is happening to him.”
The next morning, Sunday 6 December 2020, a battery of tests followed for poor little Blaine: X-rays, MRI scans, sonars of his heart, blood tests, as well as a Covid-19 test, of course. Later that day, Amber and Blaine travelled to Mediclinic Constantiaberg by ambulance, where paediatrician Dr Jonathan Buckley took over their care. They ended up spending eight days in hospital. Blaine was placed on a heart monitor and even had a lumbar puncture procedure performed as doctors battled to unravel the mystery.
He also started with physiotherapy and speech therapy to assess where he was functioning and to try to reverse the effects of the paralysis. At last the family received a diagnosis: Blaine has the autoimmune disorder antiphospholipid syndrome.
I could see a cry of help in his eyes.