Love for Shea

Categories: In The Media.

“Because when you’re hurting all you want is to be in your mom’s arms,” said Christy Fell, Shea’s mom, who never once left his room for those three weeks.

Shea was born Dec. 9 of last year and died July 12 at 11:08 p.m. while snuggled close to his mother.

Shea had a rare skin disorder called junction epidermolysis bullosa (EB) that made his skin so sensitive that even the slightest friction gave him blisters. He had the kind of EB where a variant of the genetic disorder caused the blisters to compound on themselves and to break out internally, which impaired his ability to ingest food properly and made it difficult for him to breathe.

The challenges of the family were not only Shea’s. When Christy gave birth she hemorrhaged and almost bled to death. While her son was flown to B.C. Children’s Hospital, she remained in hospital until she was able to join dad, Bryn, and baby Shea in Vancouver four long days later. With a predicted six- to 12-month recovery time from the surgery, Christy put her needs aside.

The community came together to support the Fell family with donations as baby Shea needed special formula, seamless clothing, ultra soft blankets and special linings for bathtubs, car seats and his crib. It also meant an ongoing need for medical supplies and special dressings for the worst of the blisters.

Bryn started a blog about their journey with Shea called Love For Shea where he poignantly updated the struggles for the little boy and expressed his gratitude to the community for their unending support. Bryn said it was cathartic to write the blog. It was a way for him to process what they were going through and a way to share Shea with the world.

“I don’t think anything would have made this easier but knowing that so many people were behind us definitely helped us feel stronger,” said Christy, a first-time mom. “We want to thank the community for falling in love with Shea and we were very touched.”

Bryn and Christy, whose future children have a one-in-four chance of being born with EB, made the difficult decision to stop Shea’s treatment three weeks before he died.

“It was the best for Shea,” said Christy, as she and Bryn sat closely together on their living room loveseat. “There was just too much infection.”

“He wasn’t responding to the antibiotics and his body was starting to shut down and his lesions were so large that even if we were able to fight them with the antibiotics, he wouldn’t be able to recover from them,” said Bryn, glancing at the empty baby swing still in the corner of the room.

During his final days, the family was at Canuck Place Children’s Hospice and made Shea as comfortable as they could. The doctor said Shea only had days but he hung on for three weeks. Christy said she thinks he did it for her and Bryn.

“It was the first time we ever got to hold him without thinking what was next, giving him medications, the hour-and-a-half long feedings, changing his dressings,” said Christy, through her tears. “So we just got to enjoy him for three weeks and it was beautiful.”

During the four-hour long process of changing his bandages three times a week, Christy’s job was to keep Shea comfortable and calm. So she used to play a little game. She would noisily kiss him all over his face to distract him.

To view the full article, please visit The Prince George Citizen.

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