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Healthier Children. A Better World.™
Meet Lori & Ethan
In 2002, Lori’s second daughter, Brooklyn passed away at five months-of-age, due to Severe Combined Immunodeficiency Disorder (SCID).  This is a rare disorder where the body lacks specialized white blood cells (B- and T-lymphocytes) which defend the body from infection. Essentially babies with SCID have little or no immune system.
Ethan, Severe Combined Immunodeficiency Disorder
Doctors told Lori and her husband Jason that any future children would have a 25 per cent chance of being born with SCID. Â Their eldest daughter, Madison and their third daughter, Sheridan, were both born free of the disorder.
In the spring of 2005, Lori gave birth to her fourth child - a son named Ethan. Moments after birth, Ethan was diagnosed with SCID. Nothing was more upsetting to Lori than hearing that another baby, her precious baby boy, had tested positive for this rare disorder. Although the disorder is complicated to understand the effect of this disease is easy to understand: even a simple cold could kill newborn Ethan.
Immediately Lori handed her newborn to the waiting arms of a nurse and he was moved into a reverse isolation room at The Hospital for Sick Children. This was Ethan's home for the first eight months of his life. To prevent exposure to any infection, no matter how minor, Ethan had virtually no contact with the outside world. The only way to give Ethan a fighting chance at life was a bone marrow transplant. After more than a five-month-long wait for a donor, Ethan's doctors found a suitable match.
During the eight months that Ethan spent at SickKids, Lori longed for nothing more than to kiss him, hold him and have that special connection mothers have with their babies, through skin-to-skin touch. Instead, every time Lori wanted to cuddle and embrace her baby she underwent an elaborate routine. She placed a net over her hair, she washed her hands, she put a sterile gown over her clothes, she placed surgical gloves on both hands, and she tied a mask around her nose and mouth. Then Lori was ready to press the button to open the door of the sealed room. Several layers separated Lori from skin-to-skin contact with Ethan. Kisses were showered upon him from underneath the mask.
Both Ethan's doctors and his parents were determined to find a way for Ethan to spend Christmas 2005 at home with his two other siblings. Because of the groundbreaking research and knowledge at SickKids about SCID, shortly before Christmas, Lori and Ethan were able to experience the magic of the holidays at home - where they belonged. At that point, his sisters only knew him as their baby brother behind the glass and Christmas would be the best chance to get to know him. Finally, his family was able to catch up on all the missed hugs and kisses from the past eight months. Currently, Ethan comes back once a month to visit his first home for check-ups and to visit old friends.
The Hospital for Sick Children is a referral centre for infants from across Canada who have a condition called Severe Combined Immune Deficiency (SCID). The Bone Marrow Transplant Program for primary immunodeficiencies at SickKids is the only one of its kind in Canada. It is a leader in the field of transplantation for SCID both in Canada and around the world.
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