The CHEO BBQ 2023 Honorary Family

Tiny Hearts Feeling Big Love ​

By: Stephanie Egan

Blakelyn O’Reilly may only be just shy of 3 years old, but she has a signature look. The tiny fashionista is known in CHEO’s pediatric intensive care unit (PICU) for her giant bows and head bands perfectly coordinated with stylish outfits. The PICU team may be highly specialized medical experts – but to Blakelyn and her parents, Courtney and Cody O’Reilly, they are family.

Technology allows for diagnosis of certain conditions before birth. In Blakelyn’s case, at 18-20 weeks’ gestation, her heart the size of a quarter, an ultrasound told the doctors something was wrong. The diagnosis: complex congenital heart disease. But knowing early meant plans could be made to intervene right away.

CHEO cardiologist, Dr. Letizia Gardin had instructions for Courtney and Cody: “I tell this to all of my families: My job is to prepare for the worst and your job is to hope for the best. That’s how it works.”

“It was tough,” Courtney admits. “But in retrospect we had time to prepare – to consult with the cardiac team so we knew just what to expect when she finally arrived. We knew there would be time spent in the hospital, and that she would be in the best of hands.”

Blakelyn made her grand entrance on June 23, 2020, in the middle of a global pandemic. Born with a partially developed heart, the four chambers and none of the walls had formed properly. Without those natural barriers Blakelyn’s oxygenated and non-oxygenated blood were mixing. On top of all of that, she has a narrow aortic arch which makes it difficult for blood to flow through and reach the rest of her body.

Dr. Gyaandeo Maharajh performed the first of three of Blakelyn’s surgeries when she was just seven days old. He immediately put these new parents at ease.

“We had confidence in him,” Cody says.

This is the ultimate compliment from any parent asked to hand over a newborn for life saving surgery. “He let us know the risks and concerns in a way we could manage, and he was so kind.”

But Blakelyn’s recovery was not without complications including infections, hospital stays, and a diagnosis of tracheobronchomalacia which means her airway collapses on each breath. She needed assistance with her breathing through a tracheostomy.

“There’ve been a lot of moments where it’s been a very close call,” Courtney says, her eyes filling with tears. “It’s very hard as a parent not to be able to help her – or to do anything.”

And COVID-19 added extra challenges, meaning family and friends had to keep their distance. Safety protocols meant Courtney and Cody couldn’t both be at Blakelyn’s bedside; they had to divide and conquer. Through it all, they say their saving grace has been CHEO and the adoring team of professionals looking after Blakelyn.

“We consider the nurses her aunts and uncles,” she says smiling.

Courtney says the experience has left them awestruck – at the resilience of the other families they’ve met, and the specialized equipment needed to care for tiny bodies in crisis, like Blakelyn. It is priceless care that relies on the commitment and generosity of the community.

After 192 days at CHEO and three open heart surgeries in her first 11 months of life, Blakelyn now wakes up at home every morning with smiles for mom and dad. But Courtney and Cody will never forget Blakelyn’s first year, spent mostly at CHEO, and isolated from loved ones.

“On our best days, they were our best friends,” Courtney says, stroking Blakelyn’s tiny hand and gazing lovingly at her miracle baby. “And on our lowest days they’ve been our support and the family we needed and we are so incredibly grateful for that.”