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Ellie Safari says she got a referral from her daughter’s pediatrician in Windsor for C.S. Mott Children\u2019s Hospital in Ann Arbor, Mich., where she learned her daughter had been misdiagnosed for more than two years. (Michael Evans\/CBC)<\/p>\nAfter years of treatment in Ontario, a Windsor mother says her 10-year-old daughter will undergo open heart surgery in Michigan next month at a substantial cost to the family. <\/p>\n
Ellie Safari says she got a second opinion to find out what was wrong with Ariyah Darden’s heart, and that took the family across the border for care where the wait times are shorter.<\/p>\n
\u201cA mother’s intuition and gut feeling is what we live with every day. I just should have listened to that intuition a little bit sooner,\u201d Safari said.<\/p>\n
Safari said the family chose to move Ariyah’s care to an American hospital, not only because of the proximity to their home in Windsor, Ont., but also to bypass wait times in Canada. There is an expected nine month wait for the necessary surgery on this side of the border, Safari said.\u00a0<\/p>\n
But it comes at a cost. While the family has insurance, it doesn’t cover the entire procedure, and so they’ve fundraised to pay about a third of the $68,000 surgery.<\/p>\n
When Ariyah was a baby, Safari says she was told by a doctor not to worry about her daughter’s heart murmur, because kids often grow out of it. Eventually, the family learned she had multiple structural issues with her heart.\u00a0<\/p>\n
Ellie Safari says she got a referral from her daughter’s pediatrician in Windsor for C.S. Mott Children\u2019s Hospital in Ann Arbor, Mich., where she learned her daughter had been misdiagnosed for more than two years. (Michael Evans\/CBC)<\/p>\n
In November 2023, when they first visited Victoria Children’s Hospital in London for a consultation, Safari said her daughter was diagnosed with a rare and complex set of congenital heart defects known as Shone\u2019s complex.\u00a0<\/p>\n
\u201cHer heart just doesn’t function like ours does and the blood flow is extremely limited,\u201d she said.<\/p>\n
In February 2024, Ariyah underwent a medical procedure in which doctors attempted, unsuccessfully, to insert a stent into her aortic arch to allow better blood flow.<\/p>\n
\u2018Something just didn’t seem right\u2019<\/p>\n
Safari said the doctor told her that Ariyah’s arch \u201cwas just too tight and they couldn’t fit the stent in\u201d and the child needed to gain weight. <\/p>\n
In an emailed statement, London Health Sciences Centre said it is unable to comment on the specifics of any individual case because of privacy concerns.<\/p>\n
A year and a half later, Ariyah had gained wait \u2014 but still not enough, and Safari said “something just didn’t seem right.”<\/p>\n
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In July, Ariyah Darden will undergo an open heart surgery in Michigan for a hypoplastic ventral aortic arch. (Submitted by Ellie Safari)<\/p>\n
Safari got a referral from Ariyah’s pediatrician, who had initially referred the family to London, to C.S. Mott Children\u2019s Hospital in Ann Arbor, Mich., for a second opinion. <\/p>\n
Doctors there said the child had a hypoplastic arch, meaning the artery carrying blood from Ariyah’s heart to the rest of her body is underdeveloped and abnormally narrow.\u00a0<\/p>\n
\u2018Ultimately addressing the same issue’<\/p>\n
Dr. Nurin Jivani-Tajdin is a pediatric cardiologist from Your Kids Heart in Scarborough and North York General Hospital. <\/p>\n
She says Shone\u2019s complex is a spectrum of heart conditions, including a hypoplastic arch, and that every cardiologist approaches treatment differently.<\/p>\n
Dr. Jivani-Tajdin is not involved in Ariyah’s care but reviewed her case for CBC.<\/p>\n
\u201cThe bottom line is that her aorta needed to be dealt with and both [hospitals] had a different approach. One wanted to try a stent and it wasn’t successful, and one wanted to go for surgery,\u201d she said.<\/p>\n
\u201cI think diagnosis-wise they both ultimately were addressing the same issue.\u201d<\/p>\n
Windsor Morning14:05How a mother’s intuition and a second opinion led to an unexpected heart surgery <\/p>\n
We have another instalment of “What I Wish I Knew” on the show today.As a Windsor mom counts down the days until her 10 year old daughter’s open heart surgery, she reflects on the years they spent thinking it was a different problem before she got a second opinion.\u00a0<\/p>\n
The surgery that Ariyah will undergo in Michigan consists of a complete transverse arch reconstruction and coarctation repair, and likely would have been the same course of action for Canadian surgeons. <\/p>\n
Dr. Jivan-Tajdin acknowledged the family likely would have waited longer in Canada, because Ariyah’s condition was not urgent.<\/p>\n
\u201cWe’re an overburdened system and I think eventually we would have gotten to her. It’s just that mom’s like, ‘no I don’t want to wait,’ and that’s a perfectly fine approach if one can afford it,” Dr. Jivan-Tajdin said, adding Canada’s healthcare system needs expanded pediatric capacity.\u00a0<\/p>\n
Safari said in hindsight, she wishes she had sought a second opinion sooner.\u00a0<\/p>\n
\u2018A little nervous\u2019<\/p>\n
Because of her condition, Darden sometimes has pain and circulation issues in her legs and irregular blood pressure. Getting the surgery sooner, Safari says, would have helped.\u00a0It’s currently scheduled for July 20.<\/p>\n
Darden, who participates in cheerleading, track and gymnastics, has more pain on days she’s not training, her mom says.\u00a0<\/p>\n
![\"A](\"https:\/\/www.newsbeep.com\/ca\/wp-content\/uploads\/2026\/06\/1782576551_793_default.jpg\")
Ariyah Darden says she likes tumbling, and has already won a lot of competitions. She says living with a heart condition doesn\u2019t make her feel different, but she is anxious about the impending surgery. (Pratyush Dayal\/CBC)<\/p>\n
Darden has many questions, from whether she can decorate her hospital room to being able to make TikTok videos again, Safari said.<\/p>\n
Darden said living with a heart condition doesn\u2019t make her feel different, but she is anxious about the impending surgery.<\/p>\n
\u201cI’m a little nervous,\u201d she said. \u201cAfter the surgery, what will recovery look like?”\u00a0<\/p>\n","protected":false},"excerpt":{"rendered":"After years of treatment in Ontario, a Windsor mother says her 10-year-old daughter will undergo open heart surgery…\n","protected":false},"author":2,"featured_media":765007,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[34],"tags":[49,48,84,392],"class_list":["post-765006","post","type-post","status-publish","format-standard","has-post-thumbnail","category-healthcare","tag-ca","tag-canada","tag-health","tag-healthcare"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/765006","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/comments?post=765006"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/765006\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media\/765007"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media?parent=765006"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/categories?post=765006"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/tags?post=765006"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}