Little Jayden Fontaine was saved in extremis by the blood of his father … A stem cell transplant was the only way to cure him of the rare syndrome which had disrupted his immune system and which threatened his survival. The latter, however, was not the ideal donor, but time was running out.
“I would have done anything [pour lui]. On the one hand, I tell myself that I’m a little his savior, but I would have taken any blood as long as it works, ”says Dave Fontaine, 30 years old.
Now 2 years old, the boy was born with an immunological disorder unbeknownst to everyone. “Nothing was wrong,” assures her mother, Laurie Dompierre.
But, quickly, the new parents of the South Shore noticed that their son was constantly regurgitating his milk and, even more worrying, he was not gaining weight.
Three kinds of milk
Following the advice of the doctors, they changed their milk three times.
“We never suspected that it could be so serious”, adds Mme Dompierre.
Finally, when they were advised to try a fourth type of milk, they opted instead for the emergency room at the Montreal Children’s Hospital.
It was “test over test” for Jayden, when it took at least seven weeks to spot the rare problem, called IPEX syndrome.
Their son was now 3 months old and weighed a pound lighter than when he was born. The hour was serious.
Four transfusions per day
He had to start over with his defective immune system, which was attacking his digestive system. Jayden has undergone chemotherapy treatments to weaken him and prepare him for a first transplant of stem cells, from the umbilical cord of a compatible donor.
Despite a promising start, this first transplant proved to be a failure. He suffered from severe anemia. Hospitalized, Jayden needed up to four blood transfusions a day to survive, according to his parents.
A second transplant became essential and there was no time to find another compatible donor. This is how his father was chosen.
They were worried, because the first attempt was the one favored by the doctors … and it had not worked. But, with the stem cells taken from his daddy’s blood, Jayden has recovered wonderfully.
“There is no word big or strong enough to express our gratitude,” say the parents in unison, who today hug a young boy who is jovial, sociable and, above all, in great shape.
Syndrome IPEX
- Immune system disruption that only affects boys
- A stem cell transplant is the only cure
A round trip to Calgary to prepare blood
In order to be viable for a transplant, the blood of Jayden’s father had to travel back and forth to Calgary, where a machine “cleaned” it to keep only the cells needed and reduce the risk of serious complications.
“His father saved him in a very urgent situation,” said Dr David Mitchell, pediatric hematologist-oncologist at the Montreal Children’s Hospital.
As a father, Dave Fontaine was therefore only half compatible with his child for a stem cell transplant, says the doctor. The first choice is usually a sibling, if not a compatible unrelated donor.
Destructive body
This last option was first favored for little Jayden, only child. But, after a few weeks, he developed “very, very, very severe anemia,” insists David Mitchell. ” [Son corps] was destroying all of his red blood cells. “
So we had to start over. The doctor explains that it is very rare to use a half-compatible donor, it was even impossible 15 or 20 years ago, because “the risk of severe complications is very common”.
But, thanks to a technology present in Alberta, and soon available in Quebec according to him, the blood can be filtered and the cells separated in order to keep only those necessary for the transplant to rebuild his immune system.
“There is always a fear, nothing is 100% in medicine […], but I’m very happy with the result, ”he adds with a relieved laugh.
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