June 14, 2018 7:37 pm
Updated: June 14, 2018 7:43 pm

‘Butterfly baby’ born to Calgary couple: ‘It breaks my heart’

WATCH: It's a heartbreaking genetic skin condition that causes layers of the skin to separate. A Calgary family is navigating through the very early days after learning their newborn son has this very rare disorder. Jill Croteau reports.

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New mom Suzanne Lamb is trying to cope as best she can with her newborn son’s skin condition.

“If you pick him up underneath the armpits, he blisters instantly,” she told Global News.

Elias is 11 days old and was born with the rare genetic disorder called epidermolysis bullosa. It’s often referred to as “butterfly skin” because the skin is as fragile and delicate as the wings of a butterfly.

Elias’ skin is so sensitive it could tear like tissue paper with the slightest friction.

READ MORE: ‘Butterfly boy’ saved from debilitating illness after doctors create new skin

His dad, Matt Taylor, said the new family had just been released from the hospital when they had to go back because their son was running a high fever and they started seeing signs of something very wrong.

“The first night we had him home all the skin on his fingers came off and we both panicked,” Taylor said.

Elias Lamb-Taylor at 11-days-old

Jill Croteau

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It was something they braced for. Elias’ father was also born with the condition and there was a 50 per cent chance his children would inherit it.

“When I was born I had very little skin from the wrist up,” Taylor said. “My dad used the term, ‘It looked like a piece of raw meat,’ and I was in the NICU for two months.”

The family has shared photos of what’s underneath Elias’ bandages online. The images are tough to look at, but the family doesn’t want to filter the difficult truth.

“It’s one thing hearing about it, but it’s a completely other thing to see an infant go through it,” Lamb said.

“I believe pictures make it a lot more real to anyone who doesn’t know anything about it.”

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While most parents look forward to the milestones, they admit they’re now waiting with much anxiety.

“I’m worried about blisters in his mouth when he’s teething or how bad his knees will break out when he starts crawling or his feet when he starts walking and putting pressure on them,” Lamb said.

READ MORE: ‘Butterfly boy’ Jonathan Pitre overjoyed after success of experimental treatment

Lamb said she hasn’t left her son’s side, spending every night at the Alberta Children’s Hospital with him.

“It’s been very difficult. I am over-paranoid with babies. I lost a kid to SIDS (sudden infant death syndrome) at 11 weeks old and I don’t let [Elias] get very far away from me,” Lamb said. “He has his own complications.”

“It scares the crap out of me.”

There is a chance Elias will be able to go home with his parents by the weekend. The family will receive home care as they learn more about this condition and how to properly dress and care for their child’s wounds.

The couple will need time away from work as they navigate through these early days and have set up a GoFundMe page to raise money to help with their finances.

© 2018 Global News, a division of Corus Entertainment Inc.

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