Parents say 'trust your gut' after infant sent home from hospital later diagnosed with meningitis

For Katelynn Hawes and Quentin Brunelle, it should have been their baby's first Christmas celebration at home with her big brother. 

Instead, the family has spent much of the holidays in hospitals as their nearly three-month-old daughter Evalynn battles a case of bacterial meningitis — one they say should have been caught by medical professionals sooner, and has left her with what's feared to be lasting damage. 

Meanwhile, Leamington-area hospital Erie Shores HealthCare has committed to a third-party review of the child's case.

The family is speaking up as a cautionary tale to other parents: "Trust your gut" and get a second opinion. 

"It's like we're living in a nightmare that we can't wake up from," Hawes said. "Nothing feels real."

Hawes, Evalynn's mom, says her normally bright and perky "perfect" baby started to seem unwell on Christmas Eve, and the family decided to take her in the next day if she hadn't improved.

On Christmas Day, Evalynn spiked a fever and hadn't improved. While the family lives in Windsor, they said they made the trip out to Leamington's Erie Shores HealthCare hoping not to wait for hours with their newborn. 

The hospital ran some tests, Hawes said, gave the family some possible explanations for Evalynn's illness and told them to head home but to come back if she worsened. Hawes said they tried to insist Evalynn be given some fluids for dehydration but were sent home anyway. The young couple says they felt their concerns were dismissed.

"Dumb kids," Brunelle said of how he feels they were treated. 

Evalynn didn't improve, Hawes said, and on Dec. 26  the family went to Windsor Regional Hospital's Met Campus where she was diagnosed with bacterial meningitis.

"We knew that something was wrong with her ... There was no way we were going back to that hospital just because we had no faith in them at that moment," Hawes said. "We were standing there [Erie Shores HealthCare] and expressing all the same concerns we did there that we did at Met and it was two completely different types of care that we received."

Bacterial meningitis is a potentially fatal infection of the tissues that cover the brain and spinal cord. 

A team from London, Ont., was brought in to assist in Evalynn's care, and after the results of an MRI confirmed the extent of the infection, Evalynn was sent to Victoria Children's Hospital Friday night. 

Evalynn has had multiple strokes, tests show, as well as seizures, according to her mother.

Now, the family says it's a waiting game as the hospital continues to test and monitor their daughter. 

"Both of our families are just distraught and everyone is just praying and praying and praying that the long-term effects aren't as bad as everyone's making it seem like they will be," Hawes said. 

Even as her daughter is still so sick, Hawes says she's speaking up because she doesn't want this to happen to another family. 

"Because in our minds, we're so stuck on the fact that we just want every parent to be able to advocate for their child because they're unable to advocate for themselves," Hawes said. "You just need to advocate for them. Every doctor has a bad day. Everyone makes mistakes ...  but we're supposed to be able to put our faith into health care.

"And if you can't do that, always get a second opinion and just advocate for your babies because they can't do it."

Hospital says it will launch third-party review

In a statement posted to Facebook on Dec. 28, the hospital said it was aware of the family's concerns. 

"ESHC has initiated a thorough review of the concern brought to our attention and will be launching a subsequent third-party review," the hospital said, noting that on completion of the review, the family will be contacted to discuss the findings and recommendations implemented. 

"We want to assure our community that any time we receive complaints or concerns from patients or their families, we take them very seriously," the statement reads. "Our team is committed to reviewing these concerns thoroughly, ensuring that appropriate actions are taken where necessary to address them and to improve the care we provide." 

The hospital said in its statement it would not provide further comment, citing privacy regulations. 

The family will be in London for at least the next four to six weeks, Hawes said, barring further complications, and likely in the future for Evalynn's continued care. Their two-year-old is at home with extended family, and Hawes and Brunelle say they're thankful for that support. 

Family doctor says meningitis often hard to diagnose in young children

Dr. Iris Gorfinkel is a family physician, clinical researcher and health contributor with CBC. She was not involved in this case — but says bacterial meningitis can be hard to diagnose in babies. 

"Initially, the symptoms can be like any flu in a child. They often start with nausea, vomiting, diarrhea, sometimes fever," Gorfinkel said. "Very young children are often not able to tell us that they're experiencing symptoms that are far more suggestive: Stiff neck, light sensitivity, that's another one. 

"It's a frightening disease because of how rapidly it spreads."

The infection occurs in about one in every 300,000 people, making it relatively rare, she said, and it spreads asymptomatically. Children under the age of five are at the highest risk because their immune systems are not fully developed. 

Meningitis can be prevented with a vaccine, which is commonly given when a baby reaches a year old, and Gorfinkel says parents should consult with a clinician about the vaccinations available. 

Reviews like the one Erie Shores has said it will undertake are common in serious cases or cases where there are concerns, like Evalynn's, she said. 

"So this is a common practice and it's a practice that makes doctors and clinicians better at what we do. We need to have the braveness, the courage to take a look in the mirror and say, how could we have done things better? This is how systems improve," she said. 

While she can't comment on an individual hospital's policies, a review might include pediatricians, neurologists, infectious disease specialists and other professionals not personally involved in the case. 

"That way we have objectivity in terms of what we could have done better, also in terms of the systems that are in place that help us recognize when things aren't perfect."

For now, Hawes says her sister has started a GoFundMe to help the family with the time off work and travel to London. 

But the family says they want to make sure what happened to them doesn't happen to others. 

"I think it was dismissed because of lack of knowledge, lack of care, lack of empathy, lack of almost everything," Brunelle said.