This 13-year-old boy nearly died from a brain infection. But his mom kept pushing for care

Paxton Clarke, 13, sits upright in his bed as he yawns repeatedly and softly explains that he doesn't remember an entire week of August.

While memories such as squeaking chairs come back to him in fragments, his mother, Jennifer Weatherbie, recalls every painful moment of how he dipped in and out of consciousness and nearly died.

She's now seeking an apology from Nova Scotia Health and the Colchester East Hants Health Centre after Paxton was sent home by two doctors in Truro, only to end up in emergency brain surgery at the IWK Health Centre in Halifax.

"For them to basically tell us to leave with a child that can't even walk or say more than a couple of words and is hallucinating … that's not normal, in my opinion," said Weatherbie. 

Paxton had been feeling poorly in July and the situation gradually worsened. On Aug. 6, she took him to a crowded emergency department at the Colchester East Hants Health Centre in Truro, but left after two hours when people around her said they had already been there for nine hours or more.

The following day, Aug. 7, she took him to a walk-in clinic where a doctor diagnosed the teen with cluster migraines.

Things escalated on Aug. 9. Paxton was unconscious and needed to be transported by ambulance to the emergency department in Truro. After seven hours, he was once again diagnosed with cluster migraines and told to rest at home.

As it turned out, Paxton had a strain of bacteria called streptococcus anginosus that developed into an infection and spread to his brain, according to Weatherbie. She said as soon as the IWK team saw her son's MRI scans on Aug. 12, they immediately jumped into action.

"The doctors were standing there waiting for me and they were like, 'It's surgery or death,'" she said.

Worsening symptoms

Weatherbie's gut instinct had prompted her to call the IWK after leaving the Truro hospital.

She said on top of the fact Paxton could barely walk or talk, he was vomiting, his forehead was protruding and his tongue was black and swollen. He also had a seizure seven hours earlier, which had never happened to him before.

"I carried him back out to the car, called the IWK and they said bring him straight down. He was in a CT scan under five minutes of being [there]," said Weatherbie.

She said a medical investigation was immediately launched by the IWK team over that weekend. She said her son had a chest X-ray in Truro, but no other scans. While Paxton had blood work done there, Weatherbie said she was told they would have to wait 24 hours for the results.

She doesn't think his case was taken seriously in Truro, which is why she has filed a complaint with Nova Scotia Health.

"When you try and advocate for yourself and you're not given what you're asking for, that's a problem," said Weatherbie. "I get that doctors are smart, because they are, but you don't live in that person's body or you don't live in their child's body."

Weatherbie told CBC she plans to file a complaint with the College of Physicians and Surgeons of Nova Scotia.

Nova Scotia Health declined comment on this specific case.

"Any time there is a serious patient safety incident involving someone who has had contact with the health care system within Nova Scotia Health, a quality review is conducted," spokesperson Jennifer Lewandowski said in a statement. 

Health Minister Michelle Thompson confirmed on Thursday there is a quality review underway in this case and those findings will be shared with the family.

At this point, she said there are no plans for her department to intervene.

"I think the quality review is the right approach, making sure that those folks review the case and understand what happened and how those recommendations can improve the system and be accountable as well for this situation," said Thompson.

She also said while this is a "concerning situation" and she hopes for a "speedy recovery," Thompson still urges Nova Scotians to trust their local hospital when kids need care.

"I would strongly recommend that people who are experiencing illness, and are very concerned, that they go to their local emergency room. There are other opportunities for clinicians to work together, and so the closest care is really the best care," Thompson said.

Patient safety concerns

Wendy Nicklin, a board member with Patients for Patient Safety Canada, said there are a "number of problems that are evident in this case," starting with the need for Weatherbie's tenacious advocacy.

"The other theme that's quite evident here is diagnostic safety," said Nicklin. "This is an example of delayed diagnosis and potentially the outcomes could have been even more grave."

She said the "near miss" is likely an indication of the current health-care crisis. Nicklin said while an internal hospital review is a good step, it's not nearly enough. She said the case deserves a thorough debrief.

"The collective team involving the patient and family need to really walk through this and say, what can we change? What could be done better? And it's not always more resources. It can be just a different process, a different way of handling something that can make a difference," said Nicklin.

She said government officials should be taking more action. 

"I think this incident involves several different locations and sites, interactions with professionals in different areas. And because of the health-system implications, I think there's issues for government here too," Nicklin said.

Road to recovery

Clarke is now home in Truro. Following a second surgery on Aug. 21, scans show the abscesses on his brain are reduced. He is continuing to get IV antibiotics with the help of home care.

Still, he has a long recovery ahead.

"He does know the seriousness of it," said Weatherbie. "He's had some good tears about death pretty much every day. And he's frustrated because it's just been a nightmare, but he's getting a little better each day."