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One door that could help Abby, not cause stress

Meet Abby. Whenever she falls asleep, she stops breathing. It’s why she was first admitted to CHEO’s ICU when she was five hours old. It’s why for the next 16 years she and her family have returned to CHEO many, many times. Abby’s mom, Teresa, never thought a door would improve things for her eldest daughter. In fact, doors and separation create anxiety. To this day they still sleep with doors open. Abby’s service needs are demanding — from all her medical appointments and procedures to speech and occupational therapy. And like many parents of kids with complex needs, it leads to isolation. “It’s not just the promise of a single building that’s exciting — it’s the promise of building a community.” The solution: A purpose-built building on the CHEO campus that brings medical needs and specialists together in one location, but also connects families with resources and each other.

A serious and clear call for help

“These kids have serious conditions and need a place that is friendly and child-centred — a place that tells them they matter,” says Christine. She bristles at the suggestion that less severe illness is seen at CHEO’s outpatient offices on McArthur Road. Hazel, 17, has PTSD and a severe anxiety disorder. She hasn’t been to her regular school for more than a year. She cuts herself. Once she cut her neck and used the blood to write “help me” on the wall. Christine is convinced that without CHEO, Hazel would be dead. Hazel desperately wants help and has developed a strong therapeutic relationship with her psychiatrist at 311 McArthur. So that’s where they go. She has also been admitted as an inpatient before. Hazel isn’t an exception: there are many who slide between the need for inpatient and outpatient services. And because of other conditions, Hazel regularly has medical appointments at the hospital, or needs to do blood work related to the medications for her mental health. For Christine, this would all be much easier in one location during the time off she has negotiated with her employer to manage the regular, multiple appointments. The solution: A welcoming, new building beside the hospital that tells Hazel she matters and means Christine just has to go to one location.

Better care with child-friendly engaging spaces

Ask four-year-old Asher his favourite part of going to CHEO and he’s likely to tell you about the lobby aquarium with all the different, colourful fish swimming around. For his mom, Sarah, this is significant because she knows how spaces that engage, enlighten and entertain make for better outcomes (and not just at CHEO). Asher has Potocki-Lupski syndrome, a genetic disorder that can cause difficulty with speech and motor skills. He needs speech therapy and physiotherapy. “The staff and services have been wonderful for my boys, but every trip to CHEO still has its challenges,” says Sarah, whose older son has also used CHEO services. Sarah has a hard time keeping Asher in the physio room. It’s drab and boring compared to the child-friendly preschool down the hall, or the fish in the lobby. Asher knows more excitement is nearby, a distraction that adds to already busy visits. The Solution: an updated facility where care rooms are child-friendly and engaging – designed for children like Asher.

Simplifying would help Avery and her mom

Michelle describes her daughter Avery’s first four years of life as being “filled with hospital visits, fear and uncertainty.” Avery has Coffin-Siris syndrome, a rare genetic disorder with about 200 reported cases worldwide. Coffin-Siris can affect many body systems, and often causes developmental delay in speech and motor skills. Avery attended CHEO consistently for outpatient appointments at 10 departments over many years. She had multiple surgeries and was fed through a g-tube until she was two-and-a-half. Michelle didn’t know what the future held for her daughter. Fortunately, Michelle can also call the beginning of Avery’s life a time of “progress and hope”— thanks to hundreds of Development and Rehabilitation therapy appointments, including occupational therapy, speech therapy, physical therapy and the clinic for augmented communication. Avery also attended the Development and Rehabilitation preschool and school. For years, Michelle drove Avery to therapy appointments throughout Ottawa, which helped Avery meet milestones that once seemed out of reach. Travelling between appointments makes it hard to fit in all the visits, and causes unneeded confusion for Avery. “It’s harder to explain where we’re going and why,” Michelle says. Being one of only 200 in the world has caused enough complications in Avery’s life; where she goes to seek treatment shouldn’t be another. The solution: A centralized location that makes it easier for Michelle to get Avery to the many medical and therapy appointments so vital in her development and to provide continuity for Avery’s care.

Spaces designed to reduce stress, improve experience

“It’s been a gift,” Joanna says about her experience with CHEO.

Joanna and her husband Bertran are parents to nine-year-old Campbell, who has cerebral palsy and is deaf-blind. For Campbell, a day at CHEO involves visits to many different clinics and therapy rooms. The days he spends at CHEO are, in a word, hectic. During a busy and stressful time, solace can be something as simple as a calm midday break. It is not only an opportunity to eat lunch, but a chance for mom and dad to slow down, connect with their son and reset for the afternoon.

“Campbell is unsettled quite easily in busy, noisy spaces. Eating in a crowded space adds stress,” Joanna says.

So, during day clinics they avoid the crowded cafeteria.

“Germs are a real concern for us; Campbell cannot risk getting sick,” she adds.

Joanna is hopeful for a place that’s quieter and more germ-free than an over-packed cafeteria. This would work for Campbell, but also for other children and youth with conditions that make them super sensitive to chaotic environments. And Joanna welcomes the idea of one door:

“Being under one roof would certainly simplify our world.”

The Solution: a new building with more attractive, updated, controlled and calmer spaces, to make sure Campbell and Joanna have a stress-free experience while accessing the services he needs in one place.

It may be Canadian to apologize, but this psychiatrist is tired of it

Meet psychiatrist Marjorie Robb. She is passionate about improving the lives of kids and teens with mental illness — some of our city’s most vulnerable young people. But she’s tired of apologizing to them and their families about where she has to provide care. The office and waiting room are cramped, dingy and unwelcoming. It’s too cold in some rooms and too hot in others. The offices aren’t soundproof, which is a serious concern for confidentiality. And there is no security on site. Recently she had a teen who needed to go to CHEO’s inpatient unit but it wasn’t safe for the parent to drive them, which can happen if people are considered a threat to themselves or others. So she and a colleague stayed with the teen nearly four hours waiting for police to arrive – a long and uncomfortable wait for the teen and parent. The solution: Marjorie and her colleagues move to a new building on CHEO’s campus.

Safe and secure is comforting, better for all

Carol’s 15-year-old daughter, Emily, uses multiple services at CHEO – genetics, endocrinology, dentistry and mental health. She has been admitted to CHEO’s inpatient services and used the outpatient services at 311 McArthur. Emily suffered a brain injury when she was young that makes it very difficult for her to regulate her emotions. A trigger can make her snap and become violent. If Emily is triggered at the hospital, they call a Code White, which brings a support team trained in non-violent intervention. This includes Security and the resources necessary if restraint is appropriate (medication and physical). Knowing these resources are at the hospital is a great comfort to Carol. The problem is that 311 McArthur does not have these resources, so when she takes her daughter there, she is on tenterhooks. Yes there are professionals, but no security and no restraints. “And it just doesn’t feel like CHEO,” Carol adds about 311 McArthur. The solution: A new building located with the hospital that is friendlier — and safer because staff can call a Code White.

Clinic’s office space not good for progress

Martine is a senior public servant whose 14-year-old daughter has severe PTSD as a result of childhood trauma. That means the world is such a scary place for her that she can’t leave the house without her service dog and she can’t go to school. She’s been going to 311 McArthur for almost two years, but is so triggered by the facility’s austere, cramped and unforgiving quarters that it is often counterproductive for Martine to take her there. What she needs is a trauma-informed space where she feels safe. Instead, Martine’s daughter has to go to a facility that she finds frightening in order to get the treatment that she desperately needs. Each visit is a struggle and progress is unbearably slow. The solution: A bright, new, welcoming and safe space designed with young people like Martine’s daughter in mind.

Creating a space for families isolated by complex care demands

Liam was born without vision in one eye and at an early age he wore a helmet to correct his skull. Before turning two years old, he was diagnosed with autism. Liam brings great joy to his parents despite his special and complex needs that require them to be on high-alert during most of his waking hours. His family endures several care-related appointments, in locations across the city. But what they desire most is a place to connect with other families akin to their own. Currently, it’s all about meeting doctors and therapists, not other parents with their shared experience. The solution: A purpose-built building on the CHEO campus that brings medical needs and specialists together in one location, but also connects families with resources and each other.

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