Their infant son had to spend several days in the ICU. Then his medical records went missing

After a harrowing experience with her infant son earlier this year, Tegan Hutz left the IWK Health Centre thankful for the “amazing” care her family received.

She thought she would soon have answers about what led to her son’s sudden onset of continuous seizures that resulted in a multi-day stay in the ICU.

Instead, Hutz and her family faced a different set of questions when the Halifax-based children’s hospital could not find records related to her son’s care for more than two months.

Initially, hospital staff could not even find proof that young Kayden Tolmie had been there at all.

“I was shocked,” Hutz said during a recent interview. “I was confused.”

Eventually staff were able to establish that Kayden had been at the IWK. But the records related to his care — which included two lumbar punctures, a battery of other tests and a followup MRI — were still missing.

Link to missing records

Because the records were missing, Kayden’s family doctor and pediatrician did not have access to them, so he remained on anti-seizure medication.

“The medication he’s on is only supposed to be temporary, not long term,” said Hutz. “It’s very tough on his body and makes him extremely drowsy.”

Hutz said there’s been no explanation for what caused the records to go missing. However, during one call with the hospital, she was told that the site recently switched to a new electronic medical record system, also known as One Person One Record, and that this was likely a factor.

The rollout of the new system in Nova Scotia has been years in the making and it made its debut at the IWK in December. It has not been without issues and some staff and patients have raised concerns about it and its impact on workflow and care.

The IWK did not make someone available for an interview for this story.

In a statement, LeeAnn Larocque, the hospital’s vice-president of clinical care and chief nurse executive, said that when a large-scale change is implemented, there can be instances where information does not appear in a timely manner in the location clinicians or patients anticipate.

“When this occurs, it is taken very seriously and reviewed promptly,” said Larocque.

“We have no evidence of a systemic issue resulting in permanent loss of entire patient records. We continue to monitor system performance closely and work with our provincial partners to address any workflow or integration challenges that are identified.”

Larocque said any patient who believes test results or clinical records might be missing or who has not received followup communication within a discussed timeframe should contact their doctor, the clinic that treated them or the IWK’s feedback service.

Central zone readies for rollout May 9

As the IWK continues to work through adapting to the new system, officials at Nova Scotia Health are preparing for its rollout in the central health zone on May 9.

In an effort to help clinicians with the transition, temporary and planned slowdowns will occur. That includes reducing the number of elective surgeries so anesthesiologist and nursing resources can be increased in operating rooms for more urgent and emergency cases.

“This ensures clinicians across operating rooms, recovery areas, and inpatient units can stay focused on patient care while safely adapting to new workflows,” the health authority said in a statement.

Clinics are also taking steps to make sure patients are aware of the transition and guard against potential bumps related to the switchover.

A message to patients of the Dalhousie Family Medicine Clinic advises them to book an appointment with their doctor following any lab work, imaging, emergency department visit or specialist appointment “to ensure all information has been received” at the clinic during the system’s transition phase.

“During transition, we want to ensure that your important medical information, including medical test results and consultant reports, are received in our offices,” the message says.

Following a cabinet meeting last week, Health Minister Michelle Thompson told reporters that One Person One Record is launching in the province to enhance communication throughout the health system, which right now uses a variety of records systems that are not linked.

But she conceded that there could be anomalies along the way.

“The point of this is to have a centralized repository for people’s information, for their imaging, for their diagnostics — all of those things — that can be easily accessed by a variety of providers.”

Although she was unfamiliar with Hutz’s situation, the minister said she knows a case of missing records would be “very distressing for the family” and they should expect the situation would be looked into to determine what happened.

‘We just want answers’

In the course of communicating with the IWK, Hutz eventually said that she planned to share her story with a reporter.

Last week — a few days after her interview with CBC — Hutz and Kayden were at a doctor’s appointment where they learned that many of the records, including the result of the followup MRI, had been found. They are still awaiting the results of other tests.

Today Kayden is happy, healthy and thriving, and Hutz has nothing but glowing things to say about the care he received while he was in hospital.

But she said she’s sharing her story because she’s frustrated about the lack of communication through the process and because she hopes it might help prevent a similar situation from happening to another family.

“We just want answers. These things can happen, but I would like to get a followup or a call or something.”

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