Raising a child takes a whole lot of heart, especially one as special as Emberly.

At less than a day old, she was diagnosed with a heart condition and will rely on cardiac care at HSC Children’s Hospital until she’s an adult.

“Having a medically complex child is something that no family can truly prepare for,” says Emberly’s mom, Haley. “We had to deal with the trauma of giving birth and finding out about her diagnosis all at the same time.”

In December 2022, Emberly was diagnosed with multiple congenital heart anomalies – problems with the structure of the heart that affect its function. Dr. Reeni Soni, Medical Director of Pediatric Cardiology at HSC Children’s, told first-time parents Haley and Jeremy their newborn needed critical, life-saving surgery to repair a narrowed artery. Along with the new diagnosis, Emberly also struggled to breathe, so she was intubated. Two days later, health care specialists flew Haley and Emberly to Edmonton for her heart procedure.

“The first thing that came to my mind was if her heart anomaly was something I caused or could have prevented,” says Haley.

“Dr. Soni reassured me there was nothing we did nor nothing we could have done to contribute, and simply called it fate.”

Jeremy joined the family in time for Emberly’s seven-hour surgery. During the procedure doctors discovered one of Emberly’s lungs was stronger than the other, making it difficult for her to breathe. Two weeks later, the infant had another surgery for her lungs, and after nearly three weeks in Edmonton, the family flew back to Winnipeg in late January 2023 for Emberly to recover.

“We have taken this challenge and are learning to own it,” says Haley. “We can help guide others who may also be experiencing a similar medical journey with their child.”

The team at HSC Children’s Pediatric Intensive Care Unit (PICU) cared for Emberly after her back-to-back surgeries. Her health improved and she was even able to feed. All seemed well until Emberly had positional asphyxiation – her breathing stopped because of an airway blockage, only days into her stay. Health care staff intubated her and kept her at the PICU for observation.

It was a heartfelt occasion on Valentine’s Day 2023, when Emberly was allowed to go home for the first time.

“We don’t take the little things for granted and truly count every day we have with Emberly at home as a blessing,” says Haley.

With ongoing heart health challenges, the family encountered another positional asphyxiation incident, this time during a drive. Haley had to perform mouth-to-mouth on her daughter in their car.

She says time stood still as they waited for paramedics to arrive and then rushed her to HSC Children’s for more time in the PICU. Again, the team at Children’s took great care of Emberly.

Despite these health challenges, Emberly is growing and thriving; she is a happy baby, laughing with her family, playing in the backyard, and making friends wherever she goes.

Haley and Jeremy share their daughter’s health story through embersoflove.ca and helped kids at HSC Children’s Hospital with their first annual holiday toy drive in November 2023.

“Emberly has proven that no matter what obstacles come her way, she has a fight in her and a fire that undoubtedly cannot be extinguished.”

Haley credits the health care staff at HSC Children’s Hospital, Travis Price Children’s Heart Centre, and Child Life specialists for helping Emberly regain her health. Emberly is expected to need the hospital throughout her life as her heart continues to grow. The family periodically returns to Edmonton for routine checkups, including a dilation of Emberly’s stent in fall 2023. Haley and Jeremy are especially grateful to Dr. Soni for her incredible support and reassurance right from the beginning.

“I quickly realized that Dr. Soni along with the rest of the team are much more than just medical professionals looking after our daughter’s heart,” says Haley.

“The health care staff are a support system and second family that genuinely care, which is evident in every visit to the Travis Price Children’s Heart Centre.”

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