Mother tells of heartbreak after adorable baby son died at two months of rare genetic condition that caused his skin to slide off his tiny body
A Boston mother shares her grief after losing her two-month-old son to a rare genetic condition that caused his skin to slide off his body.
Felix Jean died in March 2022 from complications related to epidermolysis bullosa (EB), a condition that causes painful blistering and peeling of the skin.
His devastated parents Erin and Travis Jean made the heartbreaking decision to place him on palliative care shortly after his birth, only to discover that his painful condition would only worsen with age.
“His whole life was morphine drips and wound care,” Erin told the Boston Globe.
“We talked to palliative care because I thought, ‘This is not the kind of life anyone should be living, let alone my flesh and blood.’”
A Boston mother has shared her grief after losing her two-month-old son to a rare genetic condition that caused his skin to slide off his body
“I was really concerned about his quality of life, so we took him home for hospice care. He stayed home for four more weeks and passed away in our home when he was two months old.”
EB is a collective name for a group of genetic disorders that cause blistering and skin fragility. There are about 20 cases per million births in the US.
There is currently no cure and treatment usually consists of treating the wounds that result.
Erin remembers realizing almost immediately that something was wrong with Felix after he was born without skin on the back of his hand.
“There were also bits of skin hanging out of his mouth. It didn’t feel right,” she explained.
‘Every alarm bell in me went off. As the minutes and hours passed, more and more skin began to peel off his body.
“His heels and feet were almost completely degloved. I tried to feed him, and even that tore the skin off his lip.”
Within hours, they were transferred to Mass General Hospital, where doctors diagnosed EB.
Felix Jean died in March 2022 from complications related to epidermolysis bullosa (EB), a condition that causes painful blistering and peeling of the skin
His parents made the heartbreaking decision to place him in palliative care after being told his condition would only worsen with age.
“That was the moment the ground fell out from under my feet because I was hoping so hard that something would work out in his favor,” Erin said.
She explained that children with the condition often develop deformed fingers and toes from the wounds, as well as constrictions in the throat and abrasions in their eyes.
Erin and Travis later discovered that they both carried the EB gene.
Eventually, the Jeans realized it was best if Felix came home.
He received the best care and eventually died on the family couch, with his then two-year-old sister at his side, completely unaware of the tragedy.
The couple thanks the nonprofit Debra and the doctors at Mass General for their help during this devastating situation.
While they admit they are not yet fully recovered and some friends and family members do not know how to cope with the tragedy,
Mother Erin Jean (pictured with Felix’s sister Isla) hopes to keep his memory alive and spoke out about her loss
Today, they continue to focus on keeping Felix’s memory alive with their other two children, Isla, four, and Arlo, nine months old, telling them that their brother can be found in “pink skies and rainbows.”
“I want them to know who Felix is. We talk about him,” Erin added.
“He’s everywhere, and he’ll always live in your heart, and he’s always a part of your family. My four-year-old finds solace in nature, and I think that’s the only thing I can ever really hope for.”