Nadine a 'shining example of resilience' following unique medical journey with CHEO

When Dowaa Saleh was pregnant, she received news no one wants to hear, but her unwavering determination sparked by a hit television show has now led her on a journey that’s inspired millions.

“When I was 20-weeks pregnant it was one of the hardest moments on us because the doctor told us that Nadine has a rare life threatening congenital heart disease,” Saleh said.

Known as half-of-a-heart syndrome, doctors told her if her unborn baby survived she may never live a normal life.

“The doctor told us there's nothing we can do to help her condition. It's very severe and that's where the story that's so well known for,” said Saleh.

Fearing the worse, Saleh and her husband Ali Ghaib refused to give it and it was in that moment she remembered an episode of Grey’s Anatomy.

“Out of the darkness I had that scene from that episode in my head and that’s when Ali and I started researching around the world,” said Saleh.

In that scene, fictional doctors performed a similar procedure in the womb and after travelling 7,000 km from Dubai, the couple found a doctor in the United States willing to do the ground-breaking surgery.  

The procedure in the womb allowed Nadine’s heart to grow, leaving her with around 80 per cent normal function.

“Her story inspired millions of lives but what people don’t know that was only the start of her journey Nadine not only is she a congenital heart warrior, she’s also a craniosynotosis survivor, a condition where the bones in the skull closed earlier that was supposed to be,” said Saleh.

Nadine attends the CHEO School where she has access to all the support she needs, including physiotherapy.

By her first birthday, Nadine had already undergone four surgeries and it was during the last one that doctor’s discovered at some point she’d also had a stroke.

Three years ago, Nadine, her parents and older sister moved to Ottawa where her family now relies on the incredible team of specialists at CHEO.

“We feel that we have grace because we have such a beautiful medical team that care for Nadine. From different specialties, cardiology, neurology, therapists, including, occupational therapy, physiotherapy, speech therapy,” said her father Ali Ghaib.

“All the time when we ask her to go to the doctor, she feels happy because of the impression they leave her with. As a father of a medically complex child, I’d like to thank CHEO for its amazing support.”

During the day, Nadine attends the CHEO School where she has access to all the support she needs, including physiotherapy.

“In our classroom we have kids who use a whole bunch of different pieces of equipment so having additional items like in her case, a bike, she has progressed from using a foot pedal to keep her foot on the actual pedal to she’s graduated to just being able to keep her feet on,” said physiotherapist Emma Novak.

Riding a bike was a pivotal moment for the five-year-old stroke survivor.

“One day I walk around in CHEO and I heard her giggle and she’s on a bike,” said Saleh. “They helped us with all of that without us even telling them, that’s the quality of care they give us here.”

But it wouldn’t be possible without help from the community. From the equipment to CHEO’s donor-funded child life specialists, Nadine is thriving thanks to the generosity.

“They helped us with her from wearing clothing, using scissors, going up the stairs, playing in the playground,” said Saleh.

“The community who supports CHEO is helping Nadine flourish and master skills, it’s all because of the support of the community.”

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