Nearly 3,000 children have waited too long for diagnostic tests at the Montreal Children’s Hospital to determine if they have celiac disease, according to the hospital’s ombudsman.
Natasha Contardi filed a complaint with the ombudsman’s office last spring about delayed lab tests for her daughter. Doctors at the hospital suspected that four-year-old Teagan Mack had celiac disease. In January of this year, they said she needed to eat gluten for at least 12 weeks because exposure to gluten was necessary for proper diagnostic testing.
Contardi said eating gluten caused her daughter to vomit, have severe abdominal pain, diarrhea and mood swings. She persevered as long as the tests were deemed necessary.
“Absolutely, it’s difficult. When she doesn’t feel well and wakes up in the morning, she vomits and says, “Why does my stomach hurt?” And I say because you eat foods that make you sick,” Contardi said.
Doctors carried out blood tests in March and April this year. Contardi waited weeks for the results, but was eventually told the samples could no longer be tested because they had been left in the lab too long due to a lack of staff. Doctors told him Teagan would have to return to her high-gluten diet and undergo testing again.
“I was angry. I was sad. I was crazy. Talking about this now brings back all those unhappy moments because I pushed her to take these tests,” Contardi said. “I want to be sure. If she is celiac, she is considered to have a lifelong disability, and the “The government provides a support system for this. It’s impossible to live within my means to afford a gluten-free diet because everything costs so much more.”
Contardi said turning to the private sector for testing would be a financial challenge, so she agreed to put her daughter on a high-gluten diet through the summer and repeat the tests at the hospital to children. Meanwhile, in May, she filed a formal complaint with the MCH Ombudsman.
She received a response to her complaint this week, in a letter dated September 12.
The office wrote: “Due to a lack of staff in the laboratories, the…tests were not performed in a timely manner, resulting in a delay. As a result, on May 14, there was a backlog of 2,981 samples. Following your complaint, a partnership with a private laboratory was established and samples were sent to them regularly. As of July 7, the backlog had been reduced to 600 samples. Additionally, starting August 22, these samples will arrive on a higher throughput platform. This change should avoid any future delays in processing these samples. The ministry is still working to clear the backlog.
The ombudsman’s office says Contardi’s complaint exposed a problem and apologized to her for what her daughter had to endure.
“Your complaint regarding the Laboratory’s failure to a**lyze your daughter’s sample in a timely manner is well-founded. Your complaint highlighted a systemic problem that was significantly affecting the care of many patients. …..We are sincerely sorry for the additional suffering experienced by your daughter as the first samples from February 8 and March 29 were not a**lyzed. We can a*sure you that our office takes this situation extremely seriously and will monitor the situation closely. We would like to thank you very much for contacting our office. Your complaint helped ensure that…samples were properly a**lyzed and the chronic backlog problem was resolved.
Contardi said she was happy to receive an apology, but that children shouldn’t have to wait so long in pain to get test results.
“They apologized and said they were working on it and it wasn’t enough,” she said. “I think I’m still in shock. I haven’t had time to understand the impact of 3,000 children not receiving their test results. It’s unimaginable.
The MCH told PKBNEWS it sympathizes with the families and patients who have had to endure long waits. A hospital spokesperson said in an emailed statement that understaffing — both for secretaries and technologists — contributed to the delays.
“In order to guarantee that patients obtain the results within a reasonable time, the Optilab Montréal-MUHC network (laboratory serving numerous hospitals across Quebec) has decided to temporarily turn to a private laboratory to relieve itself of the number of a**lyzes on hold. This has allowed us to significantly reduce the backlog, which has gone from 2,900 tests for celiac disease in May 2023 to 316 pending a**lyzes as of today,” said spokesperson Christine Bouthillier.
She said the lab is working to increase automation in its labs to speed up results.
Contardi said her daughter is now on a waiting list for a gastroscopy, which could take another three months.
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