Parents resigned to allow their children to die of a rare disease

Jayton was born on June 16th, complicated. However, four days after his birth, following a series of tests performed on a newborn baby at the Center Hospital University de Saint-Justin ‘in Montreal, doctors diagnosed a rare disease in little Jayton Fordin-Trolet: atresia. Multiple intestine.

The disease, which has not yet healed, attacks the intestines of newborns and condemns them to certain deaths.

When the news broke, Miriam Trolet and her husband quickly realized that their child’s fate was no longer in their hands.

Since then, there has been nothing more than this. There are no solutions beyond this. […] We can not decide whether he will continue to live or not, because the choice will die anyway., Boldly mentions Mariam Trolet.

Little Jayton Fordin-Trolet finally died at the hands of his mother at the end of the afternoon, July 3, two weeks later, surrounded by his family.

There is no medical help to die

Miriam explains with her father that they were given two choices by the Saint-Justin medical team. First, the care given to him should continue until the baby dies, which may take 40 to 50 days, otherwise Jayden will stop feeding and he will progress to departure.

Mariam Trolet and her spouse have indicated a desire for medical assistance in death, but were quickly dismissed by medical staff because the provision is prohibited for those under 18 years of age.

Therefore, the family returned to the second option, without pain, according to Jayden. Both things are scary, but less painful, Mom adds.

These are the words the family used to describe Jaiten’s last days, traumatic, painful, indescribable.

Little Jayton received a chest measurement every fifteen minutes to relieve his pain.

Photo: Tribute to the Trollet family

I could not have seen this for many years. Anyway, He could not have been for many years, Refers to Mariam Trolet. There you can see that he is in pain even on the chest.

For seven days, in front of the helpless vision of doctors, Miriam and her family, Jayton suffered.

In the last hour of his life, Jayton received a chest measurement once every fifteen minutes, otherwise he would start to squirm, beat and cry.

When[il] He stopped breathing, his heart stopped, we all thought it was over, he came back with a scream, but a loud scream, Says Miriam, exhausted from weeks of last attempt.

Struggle to change things

Mairam Trolet and his father Maxim say they want to fight to change things and make medical aid accessible to young people in the same situation as Jayden.

Jayden’s mother, Mariam Trolet, with her toddler’s grandfather, Maxim Trolet.

Photo: Radio-Canada / Rafael Polykin

I promised my boyfriend I was going to fight it. No family has to go through this again, Confirms the mother.

We do not do this to our animals, to allow them to starve, but we do this to our children.

For his part, Maxim Trolet wants to start a debate and take part in change. I am not criticizing the government, I know it is difficult to change the laws. […] If Jayton is a role model, it would be nice if we could explore it and discuss it to try to change it.

The family has also launched a crowded campaign to collect donations used for research and support for families living in similar situations.

A debate that could reopen, an expert says

Although the law respecting medical assistance in dying does not allow minorities to benefit, health law expert Jean-Pierre Maynard believes the situation may change.

He cites Belgium as an example, allowing people over the age of 12 to use this option, which does not require parental consent with the consent of their parents or even those over the age of 16. At least there is nothing that should not be discussed.

Me Jean-Pierre Maynard (archives)

Photo: Ivano Demers

Discussing what the Fordin-Trolet family wants. What he believes to do after these discussions is to change the system.

But for now, the truth is that he has vowed to continue living for Jayton, without continuing to forget.

With information from Mark-Antoine Belinger