Providing Comfort and Normalcy

In fall 2015, five-year-old Koen began complaining of increasingly frequent and aggressive headaches. Curled up in his mother’s lap, he would tell her, “Mommy, I don’t feel good. I don’t feel like myself.”

Koen and BearThe doctors believed Koen had possibly fallen playing hockey and suffered a concussion based on his symptoms. However, Koen’s condition continued to worsen, with his activity levels, eating and sleeping patterns becoming affected. Searching for answers, Karen and her husband Micah turned to the Emergency Department at Children’s Hospital at London Health Sciences Centre. His health care team performed a CT scan, which revealed good news and bad.

The good: No mass was detected.

The bad: All four ventricles in Koen’s brain were double their normal size.

Micah was in disbelief. The couple’s younger son Kole had undergone a number of health scares since his premature birth, including contracting a respiratory virus that was life-threatening at the time, but Koen had always been healthy.

Nonetheless, Karen’s gut was telling her something was really wrong with her older son and she urged her husband to brace himself for the diagnosis.

The Paediatric Neurology Team informed them that Koen had hydrocephalus, an incurable condition where cerebrospinal fluid, a water-like substance surrounding the brain and spinal cord, builds up instead of being absorbed and replaced with a new supply. Koen required an operation to relieve the pressure the fluid was putting on his brain.

Koen playing with bubblesYoung Koen stayed in the Children’s Inpatient Unit for one week before having his surgery. Karen worried about how she was going to keep her five-year-old entertained cooped up in a hospital room during this time and post-surgery but she soon found there were many resources available to her. In particular, the Child Life Program, which brought the family comfort and normalcy during this anxious and stressful time.

A Child Life Specialist visited daily, bringing fun activities and introducing opportunities for play. The Specialists distracted Koen during procedures, such as x-rays, bloodwork and ultrasounds, with an iPad or toys. They also made Koen more comfortable by explaining procedures like an MRI and surgery to him in a fun way that his young mind could understand.

 

The Child Life Team continued to be there for the family when Koen underwent surgery. To help him feel more comfortable in the operating room he was allowed to bring in his stuffed dog “Bear,” which was outfitted with a small cap and gown to match his.

“Child Life Specialists are like this little hidden gem - you don't know they even exist until you need them more than anything,” said Karen. “You cannot underestimate the effects on a child when they go through something so significant and beyond their years. To have someone there when you are at a loss as to what to do and have such a need; they are thinking about seeing it from my child's perspective - it was extraordinary.”

Koen returned to school a couple months later, however, he will require ongoing care at Children’s Hospital. It took time for the family to come to terms with Koen’s condition, his hospitalization, and what their new normal would be. A sensitive child, Koen needed to talk through his experiences, said Karen. It was an important part of his healing after such a traumatic time.

Nevertheless, Koen still has fond memories of the hospital where he met his Child Life Specialists. Whenever he returns he asks about the inpatient unit, except he refers to it as the “hotel” because, Karen said, the staff made his stay there “so, so special.”

“They make it as enjoyable as possible, under the circumstances, for these amazing little beings to cope during their stay.”