Family from Windsor Chooses U.S. for Daughter’s Heart Surgery

After 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.

Ellie Safari says she sought a second opinion to understand what was wrong with Ariyah Darden’s heart, which led them across the border for care where the wait times are shorter.

“A 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,” Safari said.

Safari explained that the family decided to transfer Ariyah’s care to an American hospital not only because it’s closer to their home in Windsor, Ont., but also to avoid long wait times in Canada. There’s an expected nine-month wait for the necessary surgery on this side of the border, Safari noted.

However, it comes with a price tag. Although the family has insurance, it doesn’t cover the entire procedure, so they’ve fundraised to cover about a third of the $68,000 surgery.

When Ariyah was a baby, Safari recalls being told by a doctor not to worry about her daughter’s heart murmur since kids often grow out of it. Eventually, they discovered she had multiple structural issues with her heart.

Ellie Safari mentions that she got a referral from her daughter’s pediatrician in Windsor for C. S. Mott Children’s Hospital in Ann Arbor, Mich., where she learned her daughter had been misdiagnosed for more than two years. (Michael Evans/CBC)

In November 2023, during their first visit to 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’s complex.

“Her heart just doesn’t function like ours does and the blood flow is extremely limited,” she said.

In February 2024, Ariyah underwent a medical procedure where doctors attempted but were unable to insert a stent into her aortic arch for better blood flow.

‘Something just didn’t seem right’

Safari shared that the doctor informed her that Ariyah’s arch “was just too tight and they couldn’t fit the stent in” and suggested that she needed to gain weight.

The London Health Sciences Centre stated via email that they can’t comment on specifics regarding individual cases due to privacy concerns.

A year and a half later, although Ariyah had gained weight – it still wasn’t enough – and Safari felt “something just didn’t seem right.”

In July, Ariyah Darden will undergo an open heart surgery in Michigan for a hypoplastic ventral aortic arch. (Submitted by Ellie Safari)

Safari received another referral from Ariyah’s pediatrician-who originally directed them toward London-to C. S. Mott Children’s Hospital in Ann Arbor for further evaluation.

The doctors there confirmed that Ariyah had a hypoplastic arch, indicating that the artery responsible for carrying blood from her heart to her body is underdeveloped and abnormally narrow.

‘Ultimately addressing the same issue’

Dr. Nurin Jivani-Tajdin is a pediatric cardiologist at Your Kids Heart in Scarborough and North York General Hospital.

She explains that Shone’s complex includes various heart conditions such as hypoplastic arches and emphasizes that each cardiologist has their own approach when it comes to treatment.

Dr. Jivani-Tajdin isn’t involved with Ariyah’s case but reviewed it for CBC.

“The bottom line is that her aorta needed to be dealt with and both [hospitals] had different approaches,” she said.
“One wanted to try using a stent which wasn’t successful while another opted directly for surgery.”

“I think diagnosis-wise they both ultimately were addressing the same issue.”

<p<Windsor Morning14:05How how How A Mother's Intuition And A Second Opinion Led To An Unexpected Heart Surgery

We have another installment of “What I Wish I Knew” on today’s show. As this Windsor mom counts down until her 10-year-old daughter’s open-heart surgery arrives; she looks back on all those years spent believing it was something else before finally getting another opinion.

The surgery planned for Ariyah involves complete transverse arch reconstruction along with coarctation repair which likely would have been recommended by Canadian surgeons too.

Dr. Jivan-Tajdin acknowledged how longer wait times would have likely occurred within Canada’s healthcare system given how non-urgent Ariyah’s condition was classified as being.

“We’re dealing with an overburdened system , and eventually we would have gotten around. to seeing patients likeher; it’s simply mom saying ‘no, I don’t wantto wait,’and that’s perfectly understandable if you can affordit”, Dr. Jivan-Tajdin remarked while also mentioning Canada’s healthcare needs increased pediatric capacity.

Safari reflected looking back now wishes she’d pursued seeking out another opinion much earlier.

‘A little nervous’

Ariyah sometimes dealswith pain alongwith circulation problemsinher legs as wellas irregularblood pressure due totheir condition. Gettingthe operation doneearlier wouldhave been beneficial, says Safari. Its currently scheduledfor July20th!

Darden enjoys cheerleading , track, and gymnastics yet experiences more discomfort on days when she’s not training , her mom notes.Ariyah Darden mentions loving tumbling already securing numerous competition wins. She shares havingaheart condition doesn’t change howshe feels differently but admits feeling anxious aboutthe upcomingoperation.(Pratyush Dayal/CBC)

Darden expressed curiosity regarding everythingfrom decoratingher hospital roomto making Tik Tokvideos again accordingto Safari.

Darden stated livingwithaheartcondition doesn’t set herdifferently apart from others yet admits feeling apprehensive aboutthe impendingoperation.

“I’m alittle nervous,” shesaid.”After thesurgery howwill recoverylook?”

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