Treating an illness’s ripple effect

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Mercedes Pederson loved being a “little mother” to her baby brother, Ryan. So it was more than shocking to the eight-year-old when Ryan developed meningitis and returned from hospital despondent, blind and with stitches in his shaved head.

“It was scary because I couldn’t play with him the way I used to and I was worried because he was blind,” Mercedes says. “I always thought it was my fault,” she admits, six months later and to the surprise of her mother Nicole. “I used up the hot water having a shower and then Ryan had a cold bath and maybe that made him sick.”

Mercedes’ guilt and anxiety are typical for siblings of children who are hospitalized, but they often occur at a time when parents are least able to address them.

“I was having a hard enough time focusing on Ryan,” Nicole says, noting that she had her two girls in tow when Ryan was admitted to Bloorview MacMillan for intensive rehab last August.

Then the family was thrown a lifeline. It came in the form of a hip child life specialist – Marusia Heney – who bounced into the room with two hearts bobbing like antennae from the top of her hairband, and one mission: tending to Mercedes’ needs.

Using a play-based approach, Marusia talked with Mercedes about her fears for her brother, gave her a notebook to record her feelings in and involved her in arts and crafts and parties on the unit. “She gave Mercedes an outlet to confide in someone about her feelings, and is so laid back that she really normalized the situation for her,” Nicole says.

Marusia also helped Mercedes become comfortable with disabilities and medical equipment. “I’m not good with seeing those things and I freak out,” Mercedes says.

Wheelchairs were particularly intimidating. So Marusia encouraged Mercedes to try one out. “We went in wheelchairs together on the elevators and up and down the halls,” Mercedes says. “I got to know how it feels to be in a wheelchair, and I picked it up really quickly.

Nicole notes that her other daughter Maggie, 4, was fully included in therapeutic playroom activities during Ryan’s three-month stay.

“The ladies in the playroom included her in everything – a trip to the zoo, visiting the Snoezelen room.”

Today, Ryan is a rambunctious 21-month-old who can see again, but who has some hearing and other issues related to his meningitis.

“If Bloorview MacMillan hadn’t provided these outlets for the girls,” Nicole says, brushing away a tear, “I don’t know if I could have been as strong.”

In addition to access to child life specialists, siblings of children at the Bloorview site can attend recreation activities, receive social work counseling and participate in sibling support groups.