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“...there was no skin on his right leg, and on both hands.”

Meet Shea Fell

Shea Frederick Fell was born in the late hours of the night on December 9, 2013 to ecstatic new parents Bryn and Christy Fell! However, the joyous homecoming that was expected was going to need to wait.

Baby Shea was delivered by emergency C-section.  Immediately following Shea’s entrance into the world he enjoyed a quick introduction to Mom and Dad, before he was then whisked away to the University Hospital of Northern BC’s Neonatal Intensive Care Unit (NICU) as the doctors were concerned that there was no skin on his right leg, and on both hands.  

Following Shea’s birth not only was there an immediate concern regarding Shea’s well-being, but Christy was in rough shape too.  There were complications with the delivery; Christy hemorrhaged and required nearly 3 hours of post-op surgery to stem internal bleeding.  During this time, surrounded by a large team of the hospital’s best doctors, Christy lost 2.5 liters of blood and received 5 blood transfusions.  Her own life was hanging in the balance.  Given the circumstances, from the time of Shea’s birth, Christy would need to wait almost 5 hours before being briefly re-united with her new son, while on her way to being admitted to the Intensive Care Unit.  Speaking with the doctors later that morning, Mom and Dad were told that the help baby Shea needed was at the BC Children’s Hospital in Vancouver.  Little to Bryn and Christy’s knowledge preparations for this trip were already in the makings for a same day departure.  Prior to Shea’s departure to Vancouver, Christy was permitted one more brief snuggle with Shea.  Immediately thereafter, and with Christy too weak to travel, Bryn and baby Shea were airlifted to BC Children’s hospital and admitted into the NICU.

The diagnosis of Epidermolysis Bullosa (EB) was presented to Bryn in person, and with Christy connected via teleconference.  Already devastated by a traumatic C-section, the news of Shea’s rare and incurable genetic skin disorder was almost unbearable.  Three days would pass until Christy was physically stable enough to be transferred to the B.C. Women’s hospital where she could be close to her new son. Christy was also airlifted to Vancouver where Bryn, Christy and Shea were  finally reunited and the work to heal could begin. 

Skin biopsies taken at the (Vancouver) B.C. Children’s Hospital on Thursday, December 19th were sent to Stanford School of Medicine, one of two locations in the U.S. with the level of specialization necessary to diagnose this extremely rare condition.  Baby Shea’s biopsy results were returned on January 2nd, 2014 and not only confirmed the diagnosis of EB, but the electron microscopy and fluoroscopy results indicated that Shea has Hertliz Junctional EB (JEB-H).

Due to the multitude of varieties, fact finding relative to EB can be challenging.  Wikipedia reports that 50 in 1 million live births are diagnosed with EB, with 1% of the cases being of the junctional nature making Shea’s condition 1 in 2 million.  Unlike strophic or dystrophic EB variants, where the separation occurs in the upper or very deep layers of the skin, Junctional EB causes blisters to form at the junction between the dermis and epidermis. The Herliz variant indicates that blisters will eventually form internally, damaging Shea’s lungs and intestines; Bryn and Christy were then told they would be lucky to have Shea through infancy.

Shea is now a month old, and is doing well for the moment.  Although he needs a specialized bottle for feeding, he is a vigorous eater and continues to gain weight. His pain, although significant, is managed by the expert care provided by the Canucks Hospice team.  Most concerning, however, is his horse cry which suggests some blisters may have already developed in his throat.

The lesions present on Shea’s leg and hands at birth still persist, and his dressings need to be changed three times a week.  The dressing change is a process requiring three hours and three people.  The blisters that frequently develop on his skin from the slightest friction must be popped and drained so they don’t spread.  Although Bryn and Christy have been able to quickly pick up the skills necessary for Shea’s care, the daily workload required to ensure Shea remains comfortable is enormous. 

Shea continues to surprise those closest to him.  He is calm yet focused and takes in the world around him with great interest.  His piercing blue eyes speak to your soul.  His greatest accomplishment to date is melting the hearts of all those around him!  He’s really been a great baby thus far in light of the internal struggles we suspect his body is already undergoing.  As of today the family remains in Vancouver while a care plan remains under development that will hopefully soon enable them to return home. 

Throughout the first month of Shea’s life a very touching fundraising effort has raised over $40,000 for this deserving family.  This website was developed to help those who have shown support stay informed on Shea’s condition, while also serving to promote awareness about EB. If you are reading this story we thank you for your interest and continued support.  Putting all this into words is at times very difficult, but we will do our best

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