A Musquodoboit, N.S., woman whose unborn daughter died in January said she believes the tragedy could have been averted if not for a new health records system used to send referrals and process other patient information.
Cassidy Horne, her boyfriend, and her mother told Global News this week that an urgent referral for an ultrasound was lost in the One Person One Record (OPOR) system that launched in December at the IWK Health Centre.
“It’s something that never leaves you, it’s never going to just go away. It’s hard to live with, that you spent so much time growing a connection and then it just gets stripped away,” Horne, 18, told CBC Radio’s Mainstreet Halifax in an interview that aired Friday.
Horne was 31 weeks pregnant when she was told that her baby was measuring at 29 weeks. She said her doctor requested an emergency ultrasound on Dec. 11, five days after OPOR was implemented, but that she never got a call about an appointment. The family said hospital staff blamed the confusion on the new records system.
She said a second referral also went missing. By the time Horne had an ultrasound in January — at 36 weeks pregnant — the family found out the baby had died the day before, with the umbilical cord wrapped around her neck.
“It was very scary because this was my first child so I wasn’t really told what I should be worried about,” said Horne. “I put a lot of trust in the doctors there and the system, and obviously shouldn’t have.”
Doctors and nurses have expressed concerns about the rollout of Nova Scotia’s $365-million electronic medical records system, including delays and inaccuracies. There are plans to expand the program this spring to Nova Scotia Health facilities.
Horne’s boyfriend and the baby’s father, William Biso, told Mainstreet it was frustrating trying to find out what was happening. He now keeps his daughter’s ashes in a necklace.
“When you know there’s something wrong, you shouldn’t have to pull up files to do an emergency ultrasound to see what’s wrong with a life,” he said.
The family said nobody suggested they go to the IWK emergency department.
The couple spent two days in the hospital after Horne gave birth. In that time, Horne’s mother, Holly Horne, said they heard over the hospital PA system that OPOR had gone down multiple times.
She told Mainstreet nobody from the hospital contacted her daughter’s family doctor about the death.
“We had to tell her what happened ourselves and she said she wasn’t surprised she didn’t get notified by the hospital because of the new system,” said Horne. “She said herself that if it was any other hospital that it happened at, she would have got notified right away.”
Horne said there were also gaps in the postnatal care. She said they drove to the hospital for her daughter’s appointment, only to be told it had been rescheduled.
“We did not get a phone call, an email, a letter in the mail — nothing saying that was rescheduled,” she told Mainstreet.
The IWK declined an interview with Mainstreet.
In a statement to Mainstreet, it said it couldn’t comment on specific cases, but that patient care remains its top priority and that the concerns raised are being taken seriously and fully reviewed.
It said patients and families are encouraged to follow up with the provider who made their referral if they feel their wait is longer than indicated or if their condition changes.
The IWK said it continues to refine OPOR’s implementation with feedback from medical staff, patients and families.
“Their input is critical to improving the system, and we are committed to ongoing engagement and listening, and the delivery of safe, high-quality care,” the statement read.
Horne said patients shouldn’t have to do the following up.
“We shouldn’t have to make these phone calls ourselves, even though I did,” she said. “That is the only reason why we received the appointment that we did, because I called and left numerous messages.”
The family is contemplating legal action.
Horne said they haven’t heard from anyone at the IWK regarding an investigation into what happened, nor have they heard from anyone in the government. After being questioned this week in the House by Opposition leader Claudia Chender, Health Minister Michelle Thompson said there would be a full investigation.
Horne said it’s been difficult to grieve her granddaughter’s death because there’s so much anger surrounding what happened. The family wants something to change so that no one goes through what they’ve experienced.
In the meantime, Horne said she’s “been trying to stay strong” for Cassidy and William.
“All the what-ifs play through your mind every day,” said Horne. “What if somebody would have pushed a little harder? What if we would’ve had our old system?”
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