We had no idea our three-year-old daughter Elan would die on that beautiful Friday afternoon.
On July 25th, 2007, our family left the house about 7:30 am and we took our kids Elan and Ben, seven, to day care and school. Other than a little fussing due to Elan's emerging molars it was a typical morning. That afternoon I received a call at work from day care saying Elan was having trouble waking up from nap time. I grabbed the children's Tylenol and went to day care.
I arrived to see her favorite teacher Janet, rocking her back and forth in one of those tiny little kid chairs. Elan's color was grey, her arms and legs were stiff and her eyes were rolled back. I yelled for someone to call an ambulance ~ she was having a seizure. I took her from Janet’s arms and with Elan on my lap and my phone to my ear I called my husband Peter, meanwhile coaxing her out of the seizure alternating between a little drink of her favorite Gatorade, then a bit of Tylenol until EMS arrived. I handed her over to the EMTs and they began working on her. As I climbed into the ambulance I saw Peter's car pull up.
One of the paramedics told me that Elan likely had a febrile seizure - a convulsion sometimes caused by a spike in body temperature - because she was fighting them off as they searched for an IV site. Just to be certain, they went to the Stollery Children's Hospital emergency department where she was admitted immediately.
Peter arrived at the hospital and together with the nurses and physicians we covered any symptoms Elan had in the days leading up to her seizures which included teething her molars, so the Tylenol had been keeping her fever in check for two or three days. There was no real disruption on the weekend, having gone to the park and to visits with friends, yet she continued to seize, this time vomiting. Physicians were puzzled when a CT scan revealed a perfectly healthy brain.
She was taken back to emergency for further assessment. We went over anything in the home she might have gotten into - medications, cleaners, laundry soap - but neither we or the ER doctors could come up with anything. The pediatric ICU team was called for a consult. Fading in and out of consciousness, the big lights in the exam room were turned off. Elan's final words were "Daddy, why is it dark?" . . . she faded away.
The PICU doctors arrived and we stepped out of the room so they could do their work as we watched through the glass doors. As they listened to her heart and lungs, their work suddenly changed to giving her tiny chest compressions, but with just three adult fingers. We watched, horrified, as they continued CPR, the team surrounding her bed. We were advised she was being taken upstairs to the PICU and asked that we wait until she was established there to see her. Helpless, we went to the chapel and prayed. Hard.
The Stollery ICU doctors threw the diagnostic book at Elan, ruling out diagnosis after diagnosis: meningitis, encephalitis, Reye's Syndrome, Kawasaki Disease. Then Elan was taken for a second CT scan with devastating results: there was no blood circulating to her brain. We'll likely never know why her brain stem had swollen to the point where her brain was being starved of oxygen-rich blood. Elan was brain dead.
As the physicians took the time needed to legally declare her brain death, we tried to absorb the news, thankfully with a waiting room packed with friends and family. As our entire family came to give her a kiss or whisper their goodbyes in her ear, Peter and I quickly agreed to donate Elan's heart, lungs, liver, kidneys and pancreas. We contacted the HOPE program (Human Organ Procurement and Exchange) and they came down with paper work we were keen to fill out. We thought organ and tissue donation could be the silver lining in this nightmare. Then we noticed the HOPE clinicians weren't coming to help us complete the forms, but soon one of the co-ordinators came over and gave us the news: since the cause of Elan's illness couldn't be diagnosed, her donation couldn't proceed. We were devastated.
On July 27th, 2007, a beautiful day in the late afternoon, pediatric ICU nurses attached another bed to Elan's so Peter and I could snuggle her one last time. Surrounded by our entire family, many friends, nurses and doctors, we gave permission to take Elan off the ventilator which had been breathing for her. Her chest rose and fell one last time.
We would like to thank everyone who had a hand in caring for Elan and for us. As Dr. Conradi said, "We never give up hope. Without hope, we have nothing."
This year A Freezing Father’s Fundraiser pays tribute to nursing staff everywhere. Our Stollery Nurses, Licensed Practical Nurses and Nursing Aids were there from the get go, caring for Elan, her big brother Ben and for us very anxious parents. They lent a sympathetic ear, answered our questions, sometimes more than once or twice. They played soft, gentle music in Elan’s room which seemed to have a calming effect on visitors and family alike. They gave us a lovely and colorful Elan-sized quilt which had been sewn by a volunteer, and tucked Elan in as we whispered desperately in her ear to fight back. At some point the energy in the room shifted to that of grace . . . our messages gradually turned to soft words of permission for her to let go . . . she had fought so hard . . . she was tired. The nursing staff were with us every step of the way.