When she was expecting her second child, Sandra was monitored by Sainte-Justine’s high-risk pregnancy clinic (GARE) for an excessive accumulation of amniotic fluid. The cause of the condition was unknown. But of all the possible scenarios, nobody foresaw that her daughter, Kloé, would be born with a serious and rare disease.
Sandra had an emergency C-section at Sainte-Justine on April 23, 2013. While staff attended to her newborn daughter, she was wheeled away to a recovery room. A nurse came in later with the Apgar score (9/10), and Sandra was told Kloé was doing well. But a few hours later, she had yet to see her daughter or even her husband. She started to suspect something was wrong.
Finally, four hours after the delivery, he came into her room, choking back tears. It turned out Kloé had Type C esophageal atresia, along with a tracheoesophageal fistula. Not only that, but her growth was stunted.
Esophageal atresia is a condition that affects about 20 newborns a year in Quebec. The rare disease is often accompanied by other birth defects. But little Kloé was relatively lucky: she was a candidate for immediate surgery to reconnect her esophagus to her stomach. Some other babies have to wait for weeks or even months before an operation is viable.
Although the procedure was a success, Kloé had other challenges to face: she would gasp for air every time she’d start to feed on a bottle. After several weeks in the hospital, she was diagnosed with a second birth defect: congenital esophageal stenosis. Part of her lower digestive tract was rigid. When she drank liquids, the tract would not expand and her windpipe would be compressed as a result. Her windpipe was also softer than usual (tracheomalacia), which meant that it would collapse whenever her esophagus expanded.
Every time I would give her a bottle, she would go all blue. Between the NICU and the neonatal ward, going back and forth between the house and intubation sessions, we were at Sainte-Justine for three months before we could actually leave for the first time.
Kloé’s entire family returned to Sainte-Justine when, at only 7 months, she was admitted for her next major operation to remove the rigid part of the esophagus. They went in through her chest and had to spread her ribs. It took Kloé a whole three weeks to recover.
They got out just in time for Christmas. But eating remained a problem. After the operation, the scar tissue had partially blocked her esophagus. She would end up back at Sainte-Justine several times in the next few years for dilation procedures and follow-up care. Proper nutrition continues to be difficult, but there have been improvements.
Even though Kloé is doing better now, she isn’t out of the woods. The way she puts it, when she’s in pain, she thinks of something beautiful. She is incredibly tough and a source of inspiration for our entire family.
Running to give back
Sandra is a giving person by nature. This only amplified when she saw her tiny newborn admitted to the hospital for the first time. Sandra felt compelled to do something to help her daughter. And to help other families like hers.
She found it particularly upsetting to see parents and children going through an ordeal similar to her own – often combined with major financial strain and hours of time travelling back and forth to the hospital. She was determined to do her part to advance medical research and improve clinical care for her daughter’s condition. But more than anything, she wanted to give back to all families with a sick child. Sandra had no idea how to go about it, but she did know she liked to run…
I was already running in the Scotiabank race and I knew there was a charity fundraising challenge associated with the event. So one day at our cottage in January 2014, when Kloé was still a baby, I set about putting together the “Sainte-Justine esophageal atresia team.” There were nine of us in total. Our initial fundraising goal was $300.
By the end of the first year, Sandra’s team had raised more than $70,000, or 60% of what all of the Foundation’s teams raised that year. A lot of the credit for this amazing achievement goes to Sandra’s father-in-law. Yvon “Papy” Loiselle took the challenge to heart. He reached out to his own network, in business and financial circles, and asked them to pitch in.
Every year, he would spur Sandra on to sign her team back up for the challenge. Yvon was a true champion of the cause and well loved by everyone around him. Unfortunately, he passed away in December 2018, a few months before last year’s Scotiabank event.
The connection he had with his granddaughters, Kloé and Roxanne, was very special. Our girls were his life. From the get-go, he said he would be there to help us. He wasn’t daunted by the idea of knocking on doors and asking people for their support. He was also a big help in coordinating the team.
Since 2014, Sandra’s team has brought in over $263,000 for the esophageal atresia clinic. Many improvements in research, patient care and parent support have been made possible because of these gifts. The clinic was even able to procure an EndoFLIP device for the operating suite to help make dilations even more precise. And the EndoFLIP is also a regular part of Kloé’s follow-up. The funds raised by Sandra’s team are also used to offset the cost of staying at Ronald McDonald House and the hospital parking fees for families of hospitalized children.
I’m lucky: my dream of running in the Scotiabank Charity Challenge with my daughter came true in 2017. Every year when I run, I think of other families who have received the same diagnosis. I want to give them hope that their child can get better. Seeing Kloé today, running and jumping all over the place, is enough to give anyone the boost of energy they need to keep on going.
