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 and we took our kids Elan and Ben, seven, to daycare 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.
Her favorite teacher Janet was 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. 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 EMT 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 in a child 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 of her head 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, just anything - but neither we or the ER physicians 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 and radically 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 physicians 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 circulation to her brain. We'll likely never know why her brain stem had swollen to the point where blood circulation had ceased. 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 which we were keen to fill out. We thought organ and tissue donation could be the silver lining in this nightmare. We noticed the HOPE clinicians weren't coming to help us complete the paperwork, 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, PICU nurses attached another bed to Elan's so Peter and I could lie down and 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."