THE FAMILIES OF COMPLEX CARE PATIENTS LIKE OWEN OFTEN NEED CARE AS WELL
Owen Rose, 4 Brooklin, Ont.
Becoming a parent is a major life transition for anyone. Becoming a parent to a child born with significant medical needs is an altogether different story. When
Julie Rose’s son, Owen, was born in March 2016 at 29 weeks, Julie and her husband were thrown into the world of neonatal intensive care, an experience she describes as traumatizing.
“Seeing other children go through highs and lows, seeing things you did not want to see, having other people see right into your life and traumatic times – it was very eyeopening from every angle,” says Julie.
She and her husband worked very hard with their doctors to get to a place where Owen was feeding and gaining weight sufficiently for them to be discharged. But when they got home, Owen wouldn’t feed, started losing weight quickly and had a major intestinal bleed.
His parents brought him to the emergency department at the Hospital for Sick Children (SickKids) and were referred to the Complex Care Team, which is focused on specialized medical care for children with complex chronic disease. Thus began a year-long diagnostic odyssey characterized by small wins, like a little weight gain, and big losses— nutritional failure, bleeds, sepsis and blood transfusions. After seeing many specialists, Owen was finally diagnosed with intestinal failure and severe dysmotility, which means the muscles of the digestive system don’t work properly. Supported by the Group for the Improvement of Intestinal Function and Treatment (GIFT team) and his Complex Care Team, Owen began to thrive.
It was a huge relief for Owen’s family, but his medical needs remained significant. When he was discharged home at 18 months, he was fully dependent on total parenteral nutrition, a solution of essential nutrients administered intravenously.
As Julie learned, the burden of medical complexity on families can be extreme. It puts many parents at risk of anxiety, depression and post-traumatic stress disorder—challenges that are only just starting to be recognized by the health-care system.
“We’re so focused on the clinical care of the child that we ignore the other patient that’s right there in front of us, who is suffering,” explains Dr. Julia Orkin, Medical Director of the Complex Care Program at SickKids.
Beyond clinical care, a mindfully designed hospital that feels hopeful and safe is a big part of healing –not just for patients, but also for families, particularly families of children like Owen, who spend more time in hospital than they do at home.
More than 60 per cent of SickKids patients are treated for more than one disease or condition.
As medical complexity grows, SickKids needs a new building with state-of-the-art spaces – from the Emergency Department, to inpatient units, to critical care units – tailored to meet both the physical and mental health needs of patients, parents, siblings and caregivers. Spaces where families can be together, be comfortable and have privacy, supported by world-leading health professionals for as long as they need it.
As Owen’s sister, Zoe, explains, “We don’t just need a hospital for my brother, we need a hospital for me too, so I have a room to snuggle him still.”
Torstar, the Star’s parent company, is in a fundraising and educational partnership with the Hospital for Sick Children to help raise $1.5 billion for new facilities. This content was produced by SickKids as part of that partnership.