At only 13, Camille has already experienced life with three different hearts. She was born with dilated cardiomyopathy, and while waiting for a suitable donor organ, she had a Berlin heart – a revolutionary ventricular assist device that has saved hundred of young lives at Sainte-Justine – implanted. And in April 2020, she received her “real” heart, the one that would get things back on track.
Camille was diagnosed with dilated cardiomyopathy when she was just two months old. Her mother, Julie, had no clue she had a heart problem, but she was concerned that her newborn had difficulty breathing.
Medical scans confirmed Camille’s heart was enlarged. The left ventricle was dilated and couldn’t pump enough blood to meet her body’s needs. Her heart muscle was weak and she had a leaky mitral valve. She was admitted to Sainte-Justine to treat the resulting heart failure while the search was on for a suitable drug treatment.
The two first years of her life were touch and go. Stomach tubes, changing drug regimens, frequent vomiting, breathing problems, weight loss, sleep apnea resulting from the heart failure, a weakened immune system… she even came down with a case of H1N1. Her cardiologist, Dr. Marie-Josée Raboisson, sat down with the two-year-old’s family to discuss transplant options in the event her heart couldn’t take any more.
But then, to everyone’s surprise, she rallied. The right combination of drugs was found, and the next decade of her life was fairly uneventful. To be on the safe side, her family adopted strict hygiene practices and made healthy eating and exercise part of their regular routine. “We bought her 10 years,” said her mother.
But they always knew the cardiomyopathy was there, lurking in the shadows. They felt like they were living on borrowed time. In spring 2019, Julie noticed a change in her daughter. She would be out of breath after a shower. She took a week to recover from a one-day obstacle course. She had a key for the school elevator because the stairs were too much for her. None of that was normal. Not for a 12-year-old.
The cardiology clinic confirmed that her condition had worsened. Discussions about a potential transplant resumed. In January 2020, Camille was officially put on the waiting list for a donor heart.
A heart transplant is a last resort, a last alternative to turn to. Since Camille was a baby, her dad and I have known that one day she would need a new heart. Twelve years after our first visit to Sainte-Justine, we were at that point.
Her heart’s ability to pump blood was deteriorating. Things were going downhill. She had to be intubated so that the medical team could treat her lungs, lower her fever and stabilize her condition. While she was intubated, Dr. Nassiba Alami Laroussi brought up the possibility of implanting a device known as a Berlin heart in Camille. The empathy, kindness and comfort in her approach puts a lump in Julie’s throat to this day.
A revolutionary ventricular assist device
The Berlin heart completely revolutionized the transplant process and how we treat children with heart problems at Sainte-Justine, and everywhere else for that matter. Most young cardiac patients now have one implanted before a transplant, given the limited number of donor hearts available in pediatric medicine. This technology helps us make transplants possible for hundreds of children, even babies younger than a year old, who represent the majority of our recipients. Before the Berlin heart, many of them didn’t make it past the waiting list.
Dr. Nancy Poirier
In 2004, two avid supporters of Sainte-Justine, Pierre Boivin and Carroll L’Italien, felt impelled to raise the funds to acquire this technology.
It was in November 2004, during one of my visits to Sainte-Justine, along with Bombardier VP Carroll L'Italien. We were looking through a window at a child who was waiting for a new heart. His days were numbered. We were told there was a device out there known as the ‘Berlin heart’ that might be able to buy him some time. But the price tag was high… Carroll and I looked at each other and knew we had to get the money as quickly as possible.
Ten days later, Sainte-Justine had its first Berlin heart, making it one of the first hospitals to use this particular piece of technology. Sainte-Justine was already a pioneer in heart transplants, with the first team in Canada to carry out the procedure in 1984. With this new device, it also positioned itself as a trailblazer in treating heart failure, and all thanks to the donors who made it possible to procure this technology.
Hundreds of lives have been saved since then… “I can see the faces and remember the names of children who are alive today because of the Berlin heart,” said Dr. Poirier.
A third heart for Camille
Fifteen years later, this precious gift continues to have an impact on youngsters like Camille.
It took over eight hours to fit Camille with the device. But the complex procedure proved to be a success in every respect. Her recovery was quick and her mechanical heart kept her blood pumping until a “real” heart became available, which turned out to be 20 days later.
It was an early morning in late April when the much-anticipated call came in. Camille’s mom and dad excitedly told her that a donor heart had been found. When Camille was being wheeled away to the OR later that morning, her mother wasn’t scared. She had every confidence that this would be a positive step forward.
Today, Camille is the picture of health. Her life is a full one: she can have fun with her friends, go swimming and biking, and do everything else a typical 13-year-old does with nothing to hold her back.
Making a difference, today and tomorrow
A gift to Sainte-Justine has a real and lasting impact on the excellence of care delivered to young patients like Camille. These donations are vital in keeping young hearts beating, both now and for many years to come.