The wonder drug that saved the life of baby Olivia
Olivia Lewis-Berglund wriggled her finger at the sound of her mother's voice.
Other than this, the tiny baby had not moved a muscle since slipping into a coma after a rare and potentially fatal infant botulism shut her body down.
It was January last year and desperate parents Anna Lewis and Jonas Berglund had only one hope - a life saving antitoxin called BabyBIG that cost $80,000 and had been rushed in from the US to treat their 12-week-old daughter.
After giving the comatose baby the jab, the doctors and her parents could only wait, hope and pray. For five excruciating days.
Until that tiny finger moved.
"As soon as I saw her finger wiggle, I shouted to the ICU nurses, 'it's worked, it's worked'," Olivia's lawyer mother, 36, said.
"Until then she had shown no sign of life, she was unconscious, had stopped breathing and had to be intubated … there was zero response, you would not have known she was alive. The finger was a defining moment, very emotional, a huge weight lifted off our shoulders.
"Each day the grip got stronger, and the eyelids flickered, she was trying to re-open her eyes, our baby was coming back to us."
Olivia's condition, so rare there have only been eight cases reported in NSW since it became notifiable in 1998, is fatal in about 5-10 per cent of cases and caused when a baby swallows a resistant Clostridium botulinum bacteria found in soil, dust and river or sea sediments, and even in honey.
Its toxins, some of the most powerful known to science, attacked her nervous system, rendering her listless and causing her to scream hysterically.
Her parents rushed her to Sydney Children's Hospital, Randwick. Within 24 hours she was paralysed.
"No one knew what was going on," said Ms Lewis, from Sydney's lower North Shore.
"At ED paediatricians put Olivia on a general antibiotic but by the afternoon she deteriorated and the following morning they gave her a lumbar puncture.
"Doctors were rushing around, shouting out codes over the loud speaker; I knew it wasn't good, as a lawyer, I started taking notes, it was a survival instinct … my husband started crying.
"The doctors were asking us questions, we had no answers for them."
Neurologist John Lawson told the parents he suspected botulism's symptoms and ordered the preferred medication BabyBIG, made from human plasma containing antibodies to fight infection caused by botulism toxin type A and B in children younger than one.
NSW Health officials approved the expensive Californian-produced medication on compassionate grounds.
"Two-and-a-half 5cm vials arrived and we were told they had to be administered within seven days to prevent any further damage from toxins," Ms Lewis recalled.
"I saw the courier bring them into ICU. I wanted to shout out 'give it to her', but the doctors had to unbox it and let it sit for an hour to dispel the air bubbles created in transit."
Olivia remained in the ICU for three weeks and in a children's ward for the same time. The ensuing months were a blur of outpatient appointments to relearn how to suck, swallow and regain the use of speech and physical therapy for her muscles.
On October 13, Olivia will turn two and the family plan to celebrate with close friends.
"She's a determined and strong-willed little girl," Ms Lewis said.
"She was behind her peers for a while but by the time she reached one she was up and at it with the rest of them. You'd never know we almost lost her."
Dr Lawson credited the speed with which the medication was administered and Olivia's strong character for her "100 per cent" recovery.
"She was at very high risk of death and would have needed to be in (ICU) for up to six months on a ventilator without the medication," he said.
"It was vital she was diagnosed quickly so the medication could work before the damage was irreversible".
Originally published as The wonder drug that saved the life of baby Olivia