‘She died in my arms, I didn’t have to worry about hurting her any more,’ says mother of baby with fatal skin condition

A mother has recalled how her baby daughter died in her arms after being born with severe form of a skin condition which causes pain at the slightest touch.

Miriam Ryle from Dublin 12 lost her baby Katie to epidermolysis bullosa (EB) 19 years ago.

“She passed away in my arms. I did not worry about hurting her any more,” Miriam said.

EB is an the extremely painful genetic condition caused by missing proteins that bind skin layers together and causes the skin to be extremely fragile.

Ms Ryle recalled that shortly after Katie’s birth a midwife noticed skin was missing from five of her fingers.

Her distraught parents were helpless as she was rushed 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.

“After a few days, Katie was transferred to the Nazareth ward in Our Lady’s Children’s Hospital, Crumlin.”

Her blisters deteriorated covering her from her shoulders to her toes and inside her mouth, causing constant pain.

A biopsy confirmed that she had Junctional EB, a severe and fatal form of the incurable condition where blistering occurs in the lower layer of the inner skin.

They christened her Katie and her aunt bought her a pink and white striped dress, white cardigan and matching pink socks.

Miriam tried to soothe the little infant in her final days by singing the folk song “My Bonnie Lies Over the Ocean.”

She remembers how on August 14, 2004, she came home and received the dreaded phone call from the hospital that Katie was about to lose her fight.

“The nurse placed her in my arms and I held her close. She passed away in my arms a few minutes later. John and I spent the next few hours with her, cherishing the last time we would see or touch our sweet baby girl.”

She was speaking out for the first time about the tragic loss to ask the public to donate to the charity Debra Ireland, which supports more than 300 people with the condition.

She said the charity was only in its early stages when she lost her daughter but she was grateful for its 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.”

Deirdre Callis, head of Debra’s family support team, said the public could honour Katie’s memory with a gift that would provide comfort, support and assistance to 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.

Donations can be made at debra.ie/donate.

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