For the last three weeks of his life, Shea Fell was always being held.
"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.
A couple of days before Shea passed away, something really special happened for the little family.
Last Thursday and Friday, as he was heavily medicated to deal with the pain, he was very sleepy and would only open his eyes occasionally.
"So Bryn was holding him and I was kissing him and I would always exaggerate it for him and say kisses and make a smooching sound, so it went like kisses - smooch - kisses - smooch and on Thursday we heard a sound and Bryn said 'was that you?' and I said 'no!' And so I would kiss him and he would make the smooch sound back and he hadn't responded to us in days, weeks," cried Christy. "He would only do it for me and he did it twice, once on Thursday and once on Friday for a couple of minutes each time - I would kiss him and he would kiss me back."
It's difficult to share their journey, Christy said. But she wanted to share that because it's been such a gift to have so much support from people.
Bryn said they wanted to share Shea with the world and they couldn't always do that because he was in the hospital so often.
When Shea was able to go home, Christy said the home care nurses in Prince George were fantastic.
"We were blessed to have support through the nurses in our home and we couldn't have done it without them," said Christy, glancing up at the Welcome Home banner still hung across the top of the window in their living room. "They held him when we couldn't and they were all beautiful women that shared in our journey."
Shea was home for almost three months off and on throughout his short life. When the family was home, there were four teams of volunteers who would provide the meals for them so they didn't have to worry about cooking as they focused their energy on Shea.
"He was a trooper," said Christy. "I've never met a stronger baby and I've worked with kids all my life. Nor have I ever met a baby with such personality. All you had to do was look into his eyes and you were taken in. He was very smart and very focused."
Canuck Place Children's Hospice where Shea and his parents spent his last days is the place you never want to go but once you get there you never want to leave, Christy and Bryn agreed.
The hospice provides specialized pediatric palliative care for children and supports the parents as well as the child.
"It's honestly the most beautiful place in the world," said Christy. "The pastor at Canuck Place, Eric Stephanson, will officiate over Shea's celebration of life here in Prince George."
As Shea was coming to the end of his journey, the staff at Canuck Place not only met his needs but made sure Christy and Bryn were cared for, as well.
"Despite it all Shea was a happy baby, he was content and he loved to smile," said Bryn. "He was a very curious baby and was always looking around and never wanted to miss anything."
The couple tried to offer Shea as many regular baby experiences as they could. Something new was introduced to him every day. A new person, a taste of ice cream, a bit of cherry pie filling, but there was never an opportunity to celebrate special occasions with him. Shea was in hospital for Christmas and Easter and Canada Day.
Tuesday was Bryn's birthday and Christy said the family was not going to stop celebrating special occasions. They are making a conscious effort to not let the bitterness and negativity shroud their lives because that's not what this was all about.
"We want Shea's life to have been about joy and moving forward we don't want to close up because of him. We want to live our life and celebrate because he was our biggest joy," said Christy. "We don't want there to be bitterness and anger because that's not - what we want his legacy to be," finished Bryn, reaching out to take Christy's hand. "Shea has taught me the meaning of love."
The family is asking for donations to Canuck Place in honour of Shea in lieu of flowers, Christy said.
The celebration of life will be held at 12:30 on Friday, July 25 at the Westwood Mennonite Church.
