Today Patricia and I pay remembrance to the passing of our Little girl Jenni. Nov 5th 1980 was and still is one of the most horrific days of our lives. We were living in Calgary; me a young architectural draftsman for UMA ( Underwood & McLellan Associates ) during the day, and Patricia working nights as a bartender for an established high-end restaurant. We couldn’t afford daycare or a babysitter in those days, so we “make do” with the little income we had.
Living in the “Bowness” community just a few minutes from Bowness Park in the neighbourhood and former town in west Calgary, Alberta.
We rented a two bedroom basement duplex a few blocks away from Bow River. Just South of us the city of Calgary was in the process of building the Canada Olympic Park (COP), formerly known as Paskapoo Ski Hill. Canada Olympic Park was one of the venues for the 1988 Winter Olympics, being the primary venue for ski jumping, bobsleigh, and luge.
And — that was the reason WE were in Calgary in 1980. UMA Engineering Firm had one of the contracts to begin designing the Canada Olympic Park, including Site Plans as far away as Kananaskis Country. I was called in from Edmonton UMA firm to begin the 8 year process of planning and development of this huge project. At the time, I was just a Junior architectural draftsman, hand-drawing architectural plans, per instructions from the highly trained Architects and Engineers.
So — the three of us moved to Calgary to further my career as an architectural draftsman. Our first months in Calgary was a happy one. Patricia, Jenni and I would explore Calgary sites, such as the Zoo and the Heritage Park Historical Village where Hollywood western movies were made, such as the classic “ The Assassination of Jesse James by the Coward Robert Ford“ starring Brad Pitt ( Jesse James) and Casey Affleck ( Robert Ford).
I remember carrying Jenni around in a kangaroo front pouch so she would be able to see the sites of the Heritage Park Historical Village. Less then a year old, Jenni eye expressions would dictate to us she enjoyed our weekend outings. One weekend we even had the opportunity to visit the town of Banff.
Everything was going well until one evening Jenni seemed more agitated then what we considered normal. As any frightened parent, I phoned our local doctor. Concerned, he made a home visit ( which is totally unheard of these days). He noticed a rash on her body, which seem unusual but not overly strange for babies of her age. He said,” If it persists, take her to the Foothills Hospital and we’ll do a complete check up.
The next evening Jenni became even more agitated with a spiking fever. Her eyes were red and the rash became more announced. It was then I phoned Patricia ( who was working nights) and explained I’m going to take her to emergency at the Foothills. Getting to the hospital, Patricia met me. As any worried parents, we wanted answers. They admitted Jenni ; after trial & error, and many specialized doctors, everyone was totally baffled to why Jenni’s temperature increased to an unsafe level. Every day and night, Patricia and I took turns being there for Jenni. The nurses would cool her down by using cool baths and a constant fan by her bed. No matter what they did Jenni’s temperature became critical. The both of us were complete distraught to the point of exhaustion. It didn’t matter, we would never leave Jenni alone. We held and hugged her as much as possible to show her, everything would be ok, and that, we were there for her.
That evening, it was my shift to be with Jenni. I gave Jenni a cool-down bath and held her some more. She began to show signs of improvement. Jenni was hungry ! That indeed is a good sign, I thought. So I was able to feed her. I remember she smiled at me with contentment.
The nurse came in, urging me, that maybe it’s a good time to go get some rest. Nodding in agreement, I decided she was right. Before putting Jenni back to bed for the night, I kissed her on the cheek. She really looked content, however I noticed her little fingers looked bluish then normal. Concerned I went to the front desk where an Intern was stationed. Explaining what I saw seemed unusual, he just looked at me with his arrogant stance and said,” Are you a doctor ?”
I said,” No. But maybe we can call our doctor ?”
This redhead seemed determined to piss me off, flatly refusing to call my physician. The nurse came over and encouraged me to go home and get some sleep. Shrugging my shoulders, I nodded, but was discouraged over the response of this intern. I knew he thought me as this young kid in my twenties who didn’t know what I was talking about. Giving up the argument, I went home.
The minute I got home, I received a emergency call from one of the nurses, that I had better get back to the hospital as soon as possible. She told me Jenni experienced a cardiac arrest and unfortunately the doctor on-call could not revive her.
Completely in rage, I rushed back to the Foothills hospital in dismay. By the time I arrived, Patricia was holding Jenni in her arms, crying intensely.
Our little Jenni didn’t survive. We were in complete sorrow. Weeks later, we learned Jenni died of severe complications from an unknown disease called Kawasaki disease, also known as mucocutaneous lymph node syndrome.
You can read more about the condition here
The point of all of this is :
1. The time we had with Jenni will be cherished the rest of our lives.
2. Physicians should pay attention to the parents. We may not have the training, but we may have some valuable information that could assist the doctors on call. In Jenni’s case, the bluish fingers could of lead the emergency doctors to act. But due to the arrogance of one intern, Jenni died.
3. If the Kawasaki syndrome is caught in time, death is preventable. Apparently survival rate is 90 percent.
4. Kawasaki disease had puzzled doctors for over 150 years, until recent years. “Dr. Tomisaku Kawasaki, who first described what is now known as Kawasaki Disease (KD), and recent reports of a multisystem inflammatory disease in children associated with the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) (MIS-C), makes a review on KD and MIS-C timely. Kawasaki Disease is a systemic vasculitis with predilection for coronary arteries occurring mostly in early childhood. The main features are high fever, extensive skin rash, cheilitis with red, cracking, bleeding lips and strawberry tongue, conjunctivitis, erythema and induration of hands and feet, subsiding with periungual peeling, cervical lymphadenopathy, and coronary artery dilation/aneurysms.
Due to the COVID virus, Kawasaki disease was brought front and centre, because both coincide with each other. “Atypical Kawasaki disease, Kawasaki-like disease, Kawasaki-COVID-19, paediatric inflammatory multisystem syndrome temporally associated with SARS-CoV-2, macrophage activation syndrome, myocarditis, toxic shock syndrome.” Read more
5. Kawasaki disease is said to be more prominent in children of Asian descent. However, we are not even close to Asian. Just recently, due to the COVID virus more Caucasian children have the Kawasaki disease symptoms. The earliest record symptom was, believe it or not, from London, when, in the year of our lord 1870, a seven year old boy died of this unknown disease. Interesting, Kawasaki disease is prone to attack younger children five years old and younger. It’s strange the symptoms started with a seven year old Caucasian boy. This proves this syndrome isn’t clearly understood, as of yet.
6. The loss of a child is extremely traumatizing to all parents involved. Life goes on, however you never forget such a loss.
7. Time never makes a difference in relationship to the loss.
8. The graphic digital drawing above is what I would like to perceive Jenni’s soul exploring the Cosmic Universes like the fictional, Jedi Rey Skywalker of the Star Wars saga. If Jenni had a chance in life, what would have she achieved?
Today, we have two wonderful daughters, Tianndra and Trisha. They never met Jenni but I believe if they did, would have loved her the same as we do.
In Conclusion, Patricia and I will keep thinking and remembering Jenni’s birth to the day we lost her. As a parent, you’ll always have that worry of your children, hoping they will succeed past you. We worry, we love and we hope.
“May The Force Be With Her Soul Exploring The Afterlife”
Rest In Peace Jenni – We miss and love YOU forever.
Love Bari and Patricia Demers 💕
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