There’s absolutely no hint in Eva’s bright eyes of everything she has gone through in the past seven years. A medical emergency in January 2023 almost claimed her life. But she has made it through to the other side, with her sense of wonder intact. That might just be her superpower. To turn the page on this chapter of her life and give back to the hospital that has taken such good care of her, Eva will proudly be serving as an ambassador for this year’s Sainte-Justine Challenge.
It was April 2016. Corinne and Leonardo were getting ready to welcome their first baby into the world, backed by the support of the GARE high-risk pregnancy unit at Sainte-Justine. A few months earlier, tests had shown an anomaly in Eva’s heart, and the doctors suspected another one in her esophagus. The NICU team stepped in immediately after she was born. Clearly, Eva had a whole village working very hard to make sure she got the best possible care.
The mild spring weather outside stood in stark contrast to the storm of activity all around her. The day after she was born, Eva had her first operation. Without it, she wouldn’t have been able to absorb any nutrients: her esophagus was linked to her trachea instead of her stomach. The procedure repaired the condition, known as esophageal atresia, and connected the two organs.
Nine months later, Eva was experiencing major reflux issues. The cause was revealed to be a hiatal hernia that had formed in the upper part of her stomach, above the diaphragm. She returned to the OR for a Nissen fundoplication, the goal of which was to close the hernia to put a stop to the reflux.
It turns out these were all birth defects attributable to VACTERL association. Her family agreed to genetic testing to help advance scientific knowledge about the condition and provide the Esophageal Atresia Clinic with a maximum of information about her case. The information collected was submitted to the scientists at the Sainte-Justine Research Centre for further study. The clinic is an invaluable hub of expertise for families like Eva’s, where various professionals can join forces and tackle these issues from a variety of angles.
We have taken a methodical, step-by-step approach to treating Eva. She has had an army of caregivers from a wide range of disciplines working together on her case from day one. At the Esophageal Atresia Clinic, we believe strongly in tearing down the silos between the different services offered to our patients. It’s the way of the future. This lets us build up our expertise working with a small group of patients living with a rare disease. The resulting knowledge will let us do even more to help them and propel research forward.
There were subsequently more challenges for Eva to face, including problems with swallowing and mucous secretion during pulmonary infection. Through it all, her family put their trust in the medical teams that were there for Eva at every turn and did everything they could to help her through each successive ordeal.
Time passed and, by age three, Eva was coming into the hospital less and less, as her health improved. And she herself had figured out how important it was to chew her food thoroughly to help keep it from getting stuck.
During this time, Eva also discovered the joys that come with being a big sister. Her family and her team of caregivers were blissfully unaware of the ticking timebomb that would explode in 2023, just as a new year got underway.
Up to that point, we had made peace with most of what she had experienced. But there was a big surprise lurking in the shadows that would throw everything into disarray.
On January 20, Eva started having excruciating stomach pains. Her parents rushed her into Sainte-Justine. Fortunately, there was very little traffic along the way. Only a few hours later, she was being wheeled into the operating suite for an emergency procedure.
The diagnosis: gastrointestinal perforation. Her stomach had burst into her abdomen. Pediatric gastroenterologist Christophe Faure had never seen anything like it in his entire career. In addition to the rupture, he noted that Eva’s stomach was distended to 10 times its normal size and contained a large amount of undigested food.
We were petrified for our daughter. Her vital signs were alarming by the time she got to the emergency room. Just three weeks before that, we had all been in Brazil on a family trip. Thank goodness we were where we were when everything happened.
The experience left its marks. There were post-surgical infections and complications galore. Her recovery was a long and protracted one. It took three whole months before she began to feel like herself again. Two weeks out of that was spent in intensive care.
During her stay, she and her family reconnected with the professionals they had lost touch with, among them nutritionist Claire Desrosiers, who had been there for them from the get-go. There were also a number of new and wonderful people in the mix, including Caroline Daoust, Eva’s nurse at the clinic, with whom they formed a very strong bond.
Much remains unknown about what led up to the events of January 20. There are several theories stemming from Eva’s medical history. But one thing is for sure: her case will be studied with interest by the professionals at the clinic. They are determined to find answers, regardless of how hard it might be. Their goal: to make things easier for the next young patients going through an experience like Eva’s.
When we think back on this journey of ours, we couldn’t be happier with the expert support we’ve received. We are delighted to be able to share our experience as part of the Sainte-Justine Challenge and raise public awareness about conditions like these. Sainte-Justine has been such an important part of our lives and will be for so many other families. We want to give back out of gratitude for the tremendous difference they’ve made in Eva’s life. In all of our lives.
Corinne’s positive outlook is shared by her daughter. Eva is bright and bubbly, and quick to marvel at the world around her. Her unadulterated sense of wonder may very well be her superpower.
Eva knows that she can have an impact on the lives of other children. She yearns to make a difference and show her support for the hospital that saved her life.
Calling all superheroes: Time to dust off those capes and flex those fundraising muscles for Sainte-Justine on October 18.
Eva and her family will proudly serve as ambassadors for the upcoming Sainte-Justine Challenge to help the institution be faster than a speeding bullet and more powerful than a locomotive in finding solutions that let more children do battle against the enemy that is a serious health condition. They would like to invite you to go the extra mile by bringing your team of four superheroes together for this one-of-a-kind team-building event. Come put your brains and brawn to the test while you do your part for this epic cause.
The ultimate goal of the Sainte-Justine Challenge is to raise the heroic sum of $500,000 to empower Sainte-Justine to make the most of every opportunity to develop and innovate in pediatric care. For this third edition, we will be honouring the true superheroes who are committed to growing Sainte-Justine’s impact beyond its wildest dreams — superheroes like Eva and other young patients like her, and the amazing people who care for them.
So what are you waiting for? Your community needs you!