For any mother, the day their child starts school is a huge milestone, but for Nelson’s Bryony McCauley the day will mark something extra special.
Tyla was an amazing second child, as a newborn he slept so much and didn’t make much of a fuss.
“Everyone kept saying I had the perfect baby because he just wanted to sleep all the time,” Bryony says.
“It was when he became hard to wake and slept through his bath that I knew something wasn’t right.”
Tyla was just 12-days-old when he was rushed to Nelson Hospital with a weak heartbeat. He was turning blue – his body was shutting down and wasn’t getting enough oxygen.
“I was in total shock. Seeing your baby like that, I just kept thinking; how did I not know something was so wrong?”
Tyla’s veins had constricted due his low pulse so the doctors tried every possible entry point to administer an anti-biotic.
“They ended up by having to drill into his leg to get any of the medication in. He was purple all over from all the needles.”
Then doctors asked if the family had been in contact with anyone who had a cold sore. They had so they also gave Tyla the antiviral Aciclovir.
It was the decision that eventually saved his life.
Tyla was put on a ventilator as he was no longer able to breath for himself, and he and his parents were transported to Wellington’s NICU on the Lifeflight plane.
“When we got to Wellington it was just chaos, there were monitors going off everywhere,” Bryony says. “Someone took us to a room and told us to rest while they tried to figure out what was going on with Tyla.
“About 15 minutes later there was a knock on the door and I just thought; ‘Oh my God, we’ve lost him’.”
They needed a sample of Bryony’s blood to test for the herpes simplex virus. She didn’t have it. Later she would be told that 80 per cent of New Zealanders have the herpes simplex virus by the time they start school and that if she had the virus she could’ve passed on the antibodies to Tyla while she was pregnant.
Tyla was diagnosed with Neonatal HSV-1 and Encephalitis.
On their third morning in Wellington, the virus had begun to attack Tyla’s brain and his liver was failing.
“We were told that unless an absolute miracle happened, our baby boy had between two and five days to live.
“I couldn’t be around him, I thought if I got any closer to him and loved him anymore, it would make it that much harder when we lost him, but my mum didn’t leave his side.”
That same night the family received a call from the nurse.
“She said you need to come over here, your boy is performing a trick for you. We ran across the street and found him breathing for himself, they’d removed the ventilator.”
Every day from then on he made slow progress, until four weeks after the ordeal began, they could bring Tyla back to Nelson.
He still needed heavy doses of medication five times a day for six months and then lower doses for the next three years. But now, four years later, Tyla is a happy and mostly healthy boy.
The trauma that his brain went through has left him with some development delays, but he receives speech therapy and teacher aide at kindergarten. The physiotherapy stopped last year.
Even if new-borns survive this virus, the long-term effects are often severe – cerebral palsy, epilepsy, blindness, paraplegia to name a few. Bryony wants raise to awareness of what a simple cold sore can do to new-born babies.
“We had no idea; my midwife didn’t even know. You don’t even have to have a visible cold sore, and you don’t have to kiss a baby, it can just be passed by skin contact. ”
“Never go near a baby if you have recently had a cold sore.”
As for the future, Bryony is excited about the possibilities.
“Everything’s exciting, there’s not a day that goes by when I don’t look at him and see my miracle.”