Janel Johnson is calling on everyday people to become heroes by donating to the 19th Annual Country 105 Caring for Kids Radiothon in support of the Alberta Children’s Hospital Foundation (ACHF).
“If you can donate, you’re changing the life of these little guys, you’re helping them save their lives,” said Johnson, whose infant grandson Oliver underwent a very risky but successful brain operation at the Alberta Children’s Hospital (ACH) last year.
“You know, when nobody thought they’d make it through something traumatic, you’re actually being a hero and helping save them,” said Johnson.
She is sharing Oliver’s story publicly to raise awareness and funds for new, state-of-the-art neurological precision kits that will make operations like Oliver’s safer while potentially providing better outcomes for kids need them.
After he was born two months premature by emergency C-section, Oliver spent the following 42 days at the Peter Lougheed Hospital before he was allowed to go home right around the May long weekend of 2021.
“He was home for about three weeks. He was acting normal. We didn’t know he was sick. He wasn’t showing any signs that he was sick,” said Johnson.
Johnson said that once Oliver did start showing signs he was sick, things went downhill fast.
“The night before (he was brought into hospital) he stopped eating. He ate one feed before (we) put him to bed and he slept through the night, which was totally not like him because he was a newborn baby,” explained Johnson.
She says it was in the very early morning hours that Oliver let out a “really creepy cry.” When she rushed to his bedroom, he was cold and pale.
“So I picked him up and we did skin-to-skin to kind of warm him up and he fell asleep.”
The next time Johnson went in to check on Oliver, she said he was having difficulty breathing and was “floppy.” That’s when she rushed him to the hospital.
“There was like — I don’t even know — 15 to 20 people just running everywhere, trying to figure out what was going on with him,” recalled Johnson. “He got intubated and just everything was happening all at once.”
Janel was told he might have a bladder infection but when she finally got the diagnosis, it was much worse.
“Oliver, unfortunately, had a very severe meningitis shortly after birth that caused some injuries to the brain and specifically the passageways which the brain fluid flows,” said Dr. Jay Riva-Cambrin, a pediatric neurosurgeon at ACH, explaining that Oliver was eventually also diagnosed with Hydrocephalus and would require surgery to drain the fluids that were building up in his brain.
“We’ve had the two procedures, the VP shunt, where it’s a silastic tubing, which moves fluid from the brain to the belly. Or this new procedure where we use these scopes,” said Riva-Cambrin.
According to the pediatric neurosurgeon, the scopes are connected to a high definition camera connected to a computer that will project the image onto a screen.
Riva-Cambrin said the scopes are flexible enough to go into the brain and “turn two or three corners and then make a hole in the brain so that fluid can leave the passageways where it’s stuck.”
“So everywhere, we’re surrounded on all sides with extremely critical structures of the human body, and there is this one- to four-millimeter target zone that is safe,” he said.
“The higher precision of the camera, the higher precision of your instruments to hit that target will minimize any complications and smooth the course of these children who already are afflicted with a serious neurological problem.”
The method is called endoscopic third ventriculostomy (ETV) and was the procedure of choice for Oliver who is barely a few months old, using the equipment currently available at the hospital.
“We use a very good scope. It’s a scope that has been around for a while. It’s the one we’ve all trained on. It’s great, but let’s just say it’s not top of the line,” said Riva-Cambrin.
“These new scopes have come out and give you like 1080P. It’s like comparing your television that you would have had in 2000 to the television you can buy now from Best Buy and so you can see the picture quality is three orders of magnitude better,” he said
Since coming home from hospital for a second time, Johnson said Oliver, now nearly 10 months old, has been reaching many of his developmental milestones.
“I’m grateful for everything that has been done for Oliver and I’m more like super, super grateful for the tools that are donated or helped raise by the Children’s Hospital to help the babies,” said Johnson.
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