Dublin mother Miriam Ryle has opened up about the heart-wrenching experience of losing her baby daughter, Katie, to the rare and severe skin condition, epidermolysis bullosa (EB). The genetic disorder, characterized by the absence of proteins binding skin layers together, inflicts excruciating pain upon the slightest touch.
Katie, born 19 years ago, succumbed to the severe and fatal Junctional EB, a form of the incurable condition causing blistering in the lower layer of the inner skin. Miriam vividly recalls the midwife’s discovery, shortly after Katie’s birth, that skin was missing from five of her fingers. Helpless, the distraught parents watched as their newborn was urgently transferred to the Rotunda Hospital’s intensive care unit.
“We couldn’t hold her or feed her. I got to hold her skin-to-skin for about two minutes, and then she was taken away,” Miriam recounted. Katie was later moved to the Nazareth ward in Our Lady’s Children’s Hospital, Crumlin, where her condition rapidly deteriorated, covering her from shoulders to toes and inside her mouth.
Despite their heartbreak, Miriam and her husband, John, cherished the brief moments with Katie. The couple spent precious hours with their daughter, clad in a pink and white striped dress, white cardigan, and matching pink socks, before receiving the dreaded call on August 14, 2004. Katie was losing her fight.
“The nurse placed her in my arms, and I held her close. She passed away in my arms a few minutes later,” Miriam said, recounting the painful moment. In an effort to raise awareness and support, Miriam has shared her story for the first time, urging the public to contribute to Debra Ireland, a charity supporting over 300 people with EB.
Debra Ireland was in its early stages when Miriam faced this tragedy, but she expressed gratitude for the subsequent support as she became part of the EB community. “The support has been brilliant. I’ve met other families who share the hardships of EB, and these are the only people that truly understand what I’ve gone through. They heal wounded hearts,” Miriam acknowledged.
Deirdre Callis, head of Debra’s family support team, emphasized the importance of public generosity to aid families facing the heart-breaking challenges of EB. “I’m devastated every time I hear a story like this. Because of your generosity, I and other members of the team can be available to a family at a moment’s notice when a baby is born with EB,” she said.
