After celebrating her seventh birthday this weekend, little Charlie’s family is hoping this lucky number will finally get her the heart transplant she’s been waiting for five years.
“I am often told that the number seven is a lucky charm. We will hope that this also applies to our daughter, who is defying all the predictions of specialists,” her mother, Enya Sérandour-Barrette, tells the Journal.
Charlie, a 7-year-old girl, has had hypoplasia syndrome since birth. The left side of his heart is partially atrophied due to this birth defect.
“If she could have a heart transplant, it would really improve her quality of life,” explains Ms. Sérandour-Barrette, who wishes nothing more for Valentine’s Day. We would be less afraid of her going into heart failure. On the other hand, we know that the risk of organ rejection can exist and is not always a miracle.
Three years in the hospital
Charlie’s family life was turned upside down in 2018. The Val-d’Or girl was initially hospitalized with pneumonia and laryngitis.
“She was gray when we got to the hospital. Doctors decided to urgently send him to CHU Sainte-Justine in Montreal. It was heartbreaking because she left on an air ambulance and I wasn’t allowed to go on board with her,” her mother recalls painfully.
Subsequently, his condition stabilized, but his loved ones had to endure several hardships. The little girl will have spent a total of 36 months of her life in hospitals. Enya Sérandour-Barrette moved into the Ronald McDonald House for almost two years.
Charlie is in good shape at the moment. She even went to kindergarten. It is his intravenous drug, Milrinone, that allows him to lead a relatively normal life.
“At the beginning of the pandemic, we were fortunate to bring her home after two years of hospitalization. Thanks to our hard work, she was the first child to benefit from inotropic milrinone therapy at home,” says Ms. Sérandour-Barrette.
Still taboo
Her daughter has been on the waiting list for a heart transplant since July 2018. She hopes her testimony will encourage more Quebecers to donate organs when they die.
“It’s still a sensitive issue and people don’t want to think about it,” notes the mother, who sensitizes netizens to this issue on social networks. “I think once we have a kid, we should have the discussion. Even as an adult you have to think about it.”
Photo courtesy of Enya Sérandour-Barrette
In February 2019, Charlie almost received the heart of a deceased child, but tests eventually revealed the organ was no match for her.
“We are not told why she has not yet received a donation. On the one hand, all the better that no child died for her. And at the same time I feel so bad just thinking about it, but every time I see a kid’s accident on the news… I think we might get a call. It’s very paradoxical, like emotions, ”says Enya Sérandour-Barrette.
Child organ donation is ‘rare’ and ‘wonderful’
Transplantation Quebec isn’t surprised that little Charlie has been waiting for a heart transplant for nearly five years, since pediatric organ donation is a rare phenomenon in the province.
dr Matthew Weiss
Medical director of organ donation at Transplant Québec
“If you have a donor child and another recipient, it works, you can say that transplantation of this organ donation is really a miracle. It’s rare. There are so many factors. All the stars have to be right,” says Dr. Matthew Weiss, medical director of organ donation at Transplant Québec.
According to his organization, as of December 31, there were only 15 children on the waiting list for an organ in Quebec. He adds that in 2022, 20 children could receive an organ transplant.
“It also has to be said that few children are dying, fortunately in some way, that’s the main reason why we have little donation among young people,” explains Dr. White.
Very sensitive topic
According to the specialist, who is also a pediatric critical care physician at CHU de Quebec, some parents simply cannot donate their child’s organs due to the shock of the child’s death.
“That’s an absolutely understandable decision,” emphasizes Dr. Matthew Weiss. There is no judgement. Also, the process of organ donation after death can be lengthy for some.
The pediatrician specifies that after the death of a young person, if their family agrees to donate their organs, the body must remain in a hospital for one to three days.
“For example, you have to keep the young person alive or do a lot of tests to see if the organs are still good for a transplant. It takes time and families will often say, and I understand them, that spending another three days in care is too much for them,” he says.
But what can we do to encourage organ transplants in Quebec?
“We should change our general culture in this regard. For example, having a debate about whether consent for organ donation should be given by default. Also, you need to talk to your doctor or loved ones about it, that will help,” says Dr. Matthew Weiss.
ORGAN DONATIONS IN QUEBEC IN 2022:
- 483 people, including 20 children, benefited from a transplant
- As of December 31, 913 patients, including 15 children, were still on the waiting list
- 171 deceased donors in Quebec made possible the transplantation of 584 organs
- 15% of organ donors sought medical assistance when dying
Source: Transplant Quebec
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