Almost 3,000 children waited too long for diagnostic tests at the Montreal Children’s Hospital to determine if they have celiac disease, according to the hospital ombudsman.
Natasha Contardi registered a complaint with the office of the ombudsman last spring related to delayed lab tests for her daughter. Doctors at the hospital suspected her four-year-old Teagan Mack had celiac disease. In January of this year, they said she needed to eat gluten for a minimum of 12 weeks, as exposure to gluten is necessary to perform proper diagnostic testing.
Contardi said eating gluten results in her daughter vomiting, severe abdominal discomfort, diarrhea and mood swings. She persevered as the tests were deemed necessary.
“Absolutely, it’s difficult. When she is feeling unwell and she wakes up in the morning and she throws up and she says, ‘Why does my stomach hurt?’ And I say because you are eating food that is making you sick,” Contardi said.
Doctors performed blood tests in March and April of this year. Contardi waited weeks for results, but was finally told the samples could no longer be tested, because they had sat out too long in the laboratory because of a staff shortage. Doctors told her Teagan would have to restart her gluten-rich diet, and undergo testing again.
“I have been angry. I have been sad. I have been insane. Talking about this now brings back all these unhappy places because I have been pushing her to go through these tests,” Contardi said. “I want to know for sure. If she has celiac she is considered to have a lifelong disability, and the government offers a support system for that. It’s impossible to live within my means to pay for a gluten-free diet because everything is so much more expensive.”
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Contardi said turning to the private sector for testing would be challenging financially, so she agreed to put her daughter on a gluten-rich diet throughout the summer and redo the tests at the Children’s Hospital. Meanwhile in May she lodged a formal complaint with the MCH ombudsman.
She received a response to her complaint this week, in a letter dated September 12th.
The office wrote: “Due to a shortage of personnel in the laboratories, the…tests were not performed in a timely fashion and this led to a backlog. Consequently, on May 14, there was a backlog of 2,981 samples. Following your complaint, a partnership with a private laboratory was established and samples have been sent to them on a regular basis. As of July 7, the backlog had been reduced to 600 samples. Furthermore, as of August 22, these samples will be coming in on a higher through-put platform. This change should prevent any future delays in processing these samples. The department is still working on clearing the backlog.”
The ombudsman’s office says Contardi’s complaint highlighted a problem, and it offered her an apology for what her daughter has had to endure.
“Your complaint regarding the inability of the Laboratory to analyze your daughter’s sample in a timely fashion is valid. Your complaint has brought to light a systemic problem which was affecting considerably the care of many patients. …..We are sincerely sorry for the additional suffering your daughter experienced because the initial samples of February 8 and March 29 were not analyzed. We can assure you our office takes this situation extremely seriously and that we will follow the situation closely. We would like to thank you very much for contacting our office. Your complaint was instrumental in ensuring that…samples are duly analyzed and that the chronic problem of backlog be addressed.”
Contardi said she is pleased she got an apology, but that children should not have to wait so long in pain for test results.
“They apologized and said they are working on it and that is not enough,” she said. “I think I am still in shock. I have not had the time to grasp the impact of 3,000 kids not having their test results. It’s unimaginable.”
The MCH told Global News it empathized with families and patients who had to suffer through long waits. A hospital spokesperson said in an email statement that staff shortages — both for secretaries and technologists — contributed to the delays.
“To ensure that patients get the results within a reasonable time, the Optilab Montreal-MUHC (a laboratory serving numerous hospitals across Quebec) network has decided to turn temporarily to a private laboratory to offload the number of pending tests. This has allowed us to considerably reduce the backlog, which went down from 2,900 tests for Celiac disease in May 2023, to 316 pending analyses as of today,” said spokesperson Christine Bouthillier.
She said the lab is working toward increasing the automation in its laboratories to expedite results.
Contardi said her daughter is now on a wait list for a gastroscopy, which could take another three months.
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