Submitted by Amanda Story, OntarioMD Practice Advisor 

On April 11, 2017, at the Muskoka Algonquin Health Centre in Huntsville, my third child was born. Clark was a perfect 19 inches long and 7.7 pounds, with a full head of hair.  But things quickly got scary, when his blood sugar and body temperature began dropping and his breathing became irregular. He was stabilized, and we were transferred to Toronto’s Sick Kids Hospital. 

Little did we know our journey with Kabuki Syndrome was about to begin. Kabuki syndrome is a rare, multisystem disorder characterized by multiple abnormalities including facial features, growth delays, varying degrees of intellectual disability, skeletal abnormalities, and short stature. There’s also the potential for a wide variety of additional symptoms affecting different organ systems. Kabuki syndrome affects males and females in equal numbers, and specific symptoms can vary greatly from one person to another. The incidence of Kabuki syndrome has been estimated to be somewhere between 1 in 32,000 to 1 in 86,000 individuals in the general population.  

Sick Kids Hospital was up and running on a computerized charting system, and was able to get all the test results from our local hospital quickly. It was amazing how hospital information flowed – physicians of all specialties sharing one chart, no test duplication, everyone knowing and seeing what had been ordered, what was pending and what the plan was.  I was a stressed out, tired and scared mom, and I appreciated not having to repeat Clark’s history over and over again.  When Clark would decide to throw a wrench in the plan, it was easy for the nurse and I to note it and a message was sent to the physician to get new orders and/or a new plan. The digital health system made it easy for the changes to be communicated to his entire team of cardiologists, respirologists, and endocrinologists.  

Eventually Clark rallied, and we were transferred closer to home, to The North Bay Regional Health Centre. It was a big adjustment. We were surprised that communication between Sick Kids and North Bay Regional Health Centre was by paper and mail. When Clark regressed a bit, it was hard to compare results, causing duplicate tests and delayed treatment while phone calls were made to discuss results. We had experienced the power of digital health at Sick Kids, and appreciated how all the health care providers were connected. At the time, North Bay didn’t offer this – though it has since implemented a computerized system. It did offer video conference calls through the Ontario Telemedicine Network’s system, which allowed Clark’s entire team to connect and get his treatment back on track. 

We finally made it home after a couple more weeks. Unfortunately, our stay at home was short. Within a couple of months, Clark caught a cold and a bad cough. We quickly took him back to North Bay Regional Health Centre, where he was admitted and put under observation. After the first 24 hours, Clark got worse. The following day, he went from needing a little bit of oxygen support to needing to be intubated and rushed to The Children’s Hospital of Eastern Ontario (CHEO), which had been consulted during his rapid decline. During transportation, his heart got tired and arrested from working so hard to make up for the decreased lung function. The amazing transfer team from Ornge was able to revive him quickly en route to CHEO. The Pediatric Intensive Care unit was ready and had pulled together a team to assess him and move him to extracorporeal membrane oxygenation (ECMO), which is a heart and lung bypass to allow him to heal.  

CHEO had just implemented a computerized charting system called EPIC. It allowed the hospital to flow information around his care, similar to what we’d seen at Sick Kids. Everyone could see and use the same information in real time to assist with coordinating Clark’s care. His entire team at CHEO – Pediatric Intensive Care Unit (PICU), cardiology, vascular surgery, perfusionists, respirology, genetics immunology, infection control, physiotherapy and pain and symptom management, along with imaging and pharmacy, were all working in one chart around a single patient. This was digital health at its best – facilitating communications and transitions in care.  

Our family physician was also kept informed through her office EMR, using Health Report Manager (HRM) to get Clark’s hospital reports quickly and keep up to date on his progress. I received many phone calls for support and counselling without having to give updates or go into details. It very much kept me sane during a very scary time.  

When Clark was able to be transferred to recovery, the same chart, same information and same teams followed him.  Even after discharge, the amazing efficiency of digital health still helps us to this day with his scheduled follow-ups. Each team can communicate and coordinate his appointments into clusters that help us save travel time, and tests and procedures can be grouped together to help minimize Clark’s discomfort. 

I am very thankful for the adoption of digital health by Ontario hospitals and health care providers. I’ve seen the high level of accuracy and understanding it offered to everyone involved in Clark’s care. It made me feel comfortable and confident that the physicians had access to everything they needed all in one shareable electronic record. Clark’s medical information followed him wherever he was treated. Digital health has helped connect all the hospitals we visited with Clark, so they could share information and make the best decisions for his care. The digital health change in our health care system is also providing more information quickly and easily to family physicians everywhere in the province. Keeping physicians up to date to provide supportive care to caregivers and other family members is easier and faster. I am convinced that digital health is removing many barriers to efficient and effective health care in Ontario, and I honestly believe it helped save my baby’s life!  

Clark is growing stronger daily. We have celebrated many “inchstones” such as regaining head and neck control and re-learning how to roll over, along with a few milestones such as pulling his socks off.  He is a very happy baby that brings so much light into our lives.