A Boston mother has spoken out about the grief of losing her 2-month-old son to a rare genetic disorder that causes his skin to peel off.
Felix Jean died in March 2022 from complications associated with epidermolysis bullosa (EB), a disease that causes painful skin blistering and peeling.
His grieving parents, Erin and Travis Jean, made the heartbreaking decision to place their son in palliative care shortly after he was born, knowing his suffering would likely worsen as he grew older.
“His life consisted of morphine drips and tending to his wounds,” Erin said. The Boston Globe.
“We consulted with palliative care because I thought, ‘This is not the life anyone should live, let alone my biological family.'”
“I was really concerned about his quality of life so I put him on home hospice. He spent the next four weeks at home and passed away in our home at two months old.”
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EB is the umbrella term given to a group of genetic disorders that cause skin blistering and fragile skin. In the United States, there are about 20 cases per million births.
There is currently no cure and it is usually managed by caring for the resulting wounds.
Erin recalled that when Felix was born with no skin on the backs of his hands, she immediately knew something was wrong.
“There was some skin hanging down from his mouth too. I just thought something was wrong,” she explained.
“All sorts of alarm bells were going off inside of me. As time went on, more and more skin was falling off his body.”
“The skin on his heels and feet had almost completely peeled off. I tried to breastfeed him but still the skin on his lips peeled off.”
Within hours, they were transferred to Massachusetts General Hospital, where doctors diagnosed them with EB.
“At that moment, I felt like the ground had completely gone out from under me because I had high hopes that something would happen in his favor,” Erin said.
She explained that children with the disease often suffer from fused fingers and toes, narrowed throats and abrasions to the eyes due to wounds.
Erin and Travis later learned that they were both carriers of the EB gene.
In the end, the Jeans realized that it would be best for Felix to come home.
He received the best possible care and eventually passed away on the family couch, surrounded by his then-2-year-old sister, who was blissfully unaware of the tragedy.
The couple is grateful to the nonprofit organization Debra and doctors at Massachusetts General Hospital for helping them get through this horrific situation.
But they acknowledge they’re still not fully healed and are struggling with friends and family not knowing how to cope with the tragedy.
Now they’re focused on keeping Felix’s memory alive for their two other children, Isla, four, and Arlo, nine months, who they say are surrounded by “pink skies and rainbows.”
“I want people to know who Felix is. We talk about him,” Erin added.
“He’s everywhere, he always lives in your heart, he’s always part of your family. My 4-year-old son seeks comfort in nature, and I think that’s all I can really hope for.”
