On Saturday, February 29th, 2020, at our 6th Annual Gift of Love gala, Canuck Place mother, Marlo Jongenburger shared the story of her daughter, Ella. Ella received expert clinical care from Canuck Place Children’s Hospice and the family continues to be supported today with by our counselling and bereavement team.
Marlo’s speech, in full, below:
My name is Marlo Jongenburger and on behalf of myself, my husband Ryan and all Canuck Place families, we want to say thank you to every one of you for attending tonight’s Gift of Love Gala.
I am humbled and honoured to be sharing the story of our family and how vital Canuck Place has been in our lives the last 4 and half years.
In September of 2015 Ryan and I were married. Two months after our wedding we were stunned to discover that at 25 weeks pregnant our baby girl was diagnosed with a genetic condition known as Trisomy 18 or Edwards Syndrom. Trisomy 18 is the addition of a third chromosome 18 that disrupts the normal pattern of development in significant ways that can be life-threatening, even before birth. Upon diagnosis, a child with Trisomy 18 is given a label of failure to live.
Before we even met her, we knew her name – Ella Elizabeth. Ella had many of the common issues associated with T18. Clenched hands, stunted growth, low-set ears, strawberry-shaped head, severe developmental delays and extensive cardiovascular issues. The medical team at BCWH were quick to inform us that due to the T18 diagnosis any major operations were not an option as Ella was considered incompatible with life. The odds of her surviving to the end of the pregnancy were slim, and the chance that she would make it through delivery was even smaller.
We were devastated.
Upon hearing this news we were referred to Canuck Place Dave Lede House in Abbotsford. Knowing absolutely nothing about the organization, we set up an in-house meeting with one of the nurse practitioners, and so began our journey with Canuck Place.
In our initial meeting with Canuck Place, the clinical team helped us create a detailed birth, medical and end-of-life care plan that included advocating for Ella during my pregnancy. We also had access to in-home care, and counselling support. It was truly a lifeline for us.
We were not alone.
Canuck Place perinatal care was especially significant while preparing for the birth of Ella. The internet is full of advice and checklists for expectant mothers and families, but what about a mother who is not expected to take her baby home? We worked closely with the nurses at Dave Lede House to consider what was important to our family, whether it was labour plans, or decisions on what lifesaving treatment would be available to Ella upon birth.
Not once, in all the questions, explanations, and tears did we feel judged, or feel the need to justify decisions we were making as parents.
We were grateful.
On March 18, 2016 our beautiful, strong, brave daughter, Ella, graced us with her presence. Our dreams came true as Ella was a fighter. We, along with our immediate families, were able to bless her with love, kisses, hugs, and tears.
We were so in love.
The next few days were chaotic, which was an understatement. But through it all my warrior princess fought. And when Ella was about 5 days old it became apparent that she wanted to hang around for a bit, and so we began our next phase of our Canuck Place Journey.
We were in the unknown.
Canuck Place’s Dave Lede house was at the time operating outpatient care and through their provincial 24-hour care line we were able to video conference with Canuck Place doctors from the maternity ward in Abbotsford. With their skills and expertise, the doctors were able to collaborate with our local doctors on Ella’s care. Canuck Place physicians took time to create a detailed medical plan as well as a flow chart of potential issues and medications we could administer at home. Through Canuck Place we also had access to a range of health care services including pain and symptom management, and memory making.
We were overwhelmed.
As we transitioned home, Ella, despite her diagnosis, continued to prove everyone wrong and as the weeks and months went on, we started to find our new normal. This normal would not have been possible without the continued support of Canuck Place.
One of our new realities consisted of having at least two adults take Ella anywhere in a vehicle, and it involved a lot of anxiety, fear, and at times medical distress for Ella. It may seem odd to have such a simple thing as getting into your car to go see the doctor, cause so much stress. The nurses and counselling staff at Canuck Place understood and were able to be a huge support by providing in-home care for our little Ella. Canuck Place nurses observed her at home and wrote detailed reports for the clinical care team. We were also blessed with a bereavement counsellor, Deborah, who is a huge part of our family’s journey. She was, and still is, open to meeting us where we are, both figuratively and literally.
We were humbled.
As Ella began to “grow” which was very slow as she only ever reached 9 and a half pounds, from a mere 4lbs 10 oz when she left the hospital. In order to make the most of whatever time we were granted, we ensured that we took Ella on activities as often as we could. When Ella was about 6 months, we had a short respite stay at Canuck Place, so that we could attend a local wedding. It was such a gift to be able to go out and know that there were dedicated nurses to diligently watch our little girl.
We got to sleep through the night!
Canuck Place also helped us in more of a non-traditional sense. In May of 2017 when Ella was 13 months, with consultation with Canuck Place doctors and nurses, we decided to take Ella to Winnipeg to see my extended family including her great grandparents.
The staff at Dave Lede House took our request in stride. Because of Ella’s medical challenges, the only option for travel was by RV. Canuck Place staff took it upon themselves to contact the Children’s Hospice in Calgary as well as children’s hospitals along the route to Manitoba, in case we ran into complications and needed medical assistance. It took so much pressure off of Ryan and I – all we needed to focus on was caring for Ella and enjoying our trip.
We were hopeful.
Another huge support to help us plan the trip home to Winnipeg, was Canuck Place counsellor Deb. Deb asked us some very candid questions. Questions that even as were talking about it seemed surreal, almost an out of body experience, yet this was our reality that we had to tackle head on if we wanted to take this trip. Deb candidly asked us if we were okay if Ella did not make the journey and did we still want to go. Working through these tough questions, assured us that we were doing the right thing for Ella and our family.
We were nervous.
Two days into our road trip, on May 14, 2017, Mother’s Day, we were “resting” in Calgary when it became apparent that we needed some medical advice about Ella’s physical condition. We called Canuck Place. The doctors and nurses suggested that we take Ella to Children’s Hospital in Calgary, and they informed the hospital staff that we were on our way. To know that Canuck Place was on our side was a huge weight lifted off our shoulders. When we arrived at the emergency room, we were immediately admitted and the doctors had Ella’s file in hand.
We were concerned.
Unfortunately, our family vacation didn’t have the outcome that we had so hoped for. We decided it was best to bring Ella home. On May 16, 2017 four days after leaving home and two days before Ella would have been 14 months, Ella passed away on a medical flight from Calgary. As we ascended into the sky she was called home to heaven. As our daughter had showed us throughout her short but impactful life, she was looking out for her mom and dad. We had time to hold her and love her as we finished the flight home. Upon landing we placed the phone call no parent should have to make. I called Canuck Place to inform them of the outcome. It was devastating, but at the same time we knew that they would know exactly what to do, and take care of the details. All we had to worry about was to take our baby home and say goodbye.
We were heartbroken.
In the weeks and months that followed Ella’s passing we were in a tailspin. There are were no words that will ever be enough to express to you or to the staff at Canuck Place, how vital their bereavement support has been. Through our grief they stood along side us and counselled us into the life of a bereaved parent. When you lose a child, it feels as if time is irrelevant and some of the simplest tasks are triggers for a full emotional breakdown. I can honestly say the hours spent talking with our counsellor Deb is one of the reasons that I stand up here tonight. The trust that we built with Deb when Ella was alive was such a hidden blessing as we navigated Ella’s passing. It takes unique and special individuals to walk along side families with an inevitable tragic ending.
We are thankful.
Though devastated by the loss of our daughter we have learned how to be at peace with our little family. We now are a family of 4 with the birth of our second child in 2018, a genetically typical boy, we named Ezra. We have learned through counselling and being part of the parent’s bereavement group at Canuck Place, that there is no need to justify our family. We cannot control the actions or thoughts of others. In the almost three years since Ella passed it has been freeing to meet other families where the only connection is a child in heaven.
We are distraught, yet we rejoice. We are heartbroken, yet we love. We are sad, yet we are happy. We cry one moment yet laugh the next.
This is the life of a Canuck Place parent. This is life we never want others to understand. However, for those families that need the support, Canuck Place is a light in the midst of a black hole.
The support you provide by attending tonight’s Gala makes a huge impact on Canuck Place families. The funds raised tonight helps families like ours, when they need it the most. Canuck Place makes a difference in all of our lives because of you.