Day 13: Edmonton

Wednesday, February 27

The hospital is a tale of two emotions, elation that a loved one has made a recovery or devastation that they have not. The various scenes are played out in the labyrinth of corridors that connect the different wards. The tears flow simultaneously and in complete oblivion of one another.  Yesterday we too were oblivious to the drama around us as we walked our little girl, our tears were of

elation. Today, our tears were of devastation.

The morning was busy. We took Ellie to the ophthalmologist to see if there might be a connection between her eyes and her heart condition. Everything looked normal, a little under developed, but the ophthalmologist felt that it was easily explained by how sick she has been. He also looked at her brain MRI, which again looked completely normal. All of this was good news.


When we returned to the NICU we were greeted by the "Heart Failure  Specialist". This was the doctor that all the other doctors had been talking about. He was the one that ultimately would say whether or not we should stay in Edmonton or go home to Winnipeg. He was also the one who would assess Ellie for a possible heart transplant.


Transplant.   Hearing that word today was like a sucker punch in the gut. A million questions filled my head... Why? Isn't she doing better? Sure we knew this might be a possible outcome but why haven't we had this conversation before now? How much longer do we have to stay here? Is there ever going to be an end to this madness? Unfortunately no one had definitive answers for me.

Did you know that transplants aren't done entirely the same way as you see them on tv?  There isn't one magical master list with every possible patient ranked in order. It is a series of tests and stages that a patient goes through. First they are tested to determine their suitability, that is, will their body handle the introduced organ or not.  If they are found to be a probable candidate they are then assessed as to the urgency of the transplant.  There is no official list, just varying levels of procedures and steps.  The cardiac team in Winnipeg is not equipped to do this type of procedure on an infant so they want the team here to start the work up before we can go home. We were assured numerous times that this was just a precaution.  Still, what a shock to the system.

Our meeting with the  "Heart Failure  Specialist" lasted over an hour. It was a sobering and very frank discussion about Ellie and her future. Being fairly analytical people, what we really wanted was some sort of certainty that we could hold on to. What we had to settle for was the statistical breakdown of probabilities from a doctor with decades of experience. What he told us was, infants with diagnosed cardio-myopathy have a 50% chance of needing a transplant within the first twenty four months of their lives. After this age the rate of transplant begins to fall. They have a 20% chance of making a full recovery. Which leaves a 30% chance of recovery with some sort of heart aid, either drugs or mechanical. The numbers don't look too bad until you start considering the number of heart transplants actually preformed on infants and the likelihood of finding a match for her. With the numbers and probabilities factoring in our heads, all the joy of our walk yesterday felt like a distant memory.

At the end of our talk he left us with this, Ellie looks to be a good candidate for a transplant in the future.  Right now however, she is not in need of one. We will have to be vigilant in monitoring her and have regular checkups to assess the health of her heart. Her remarkable turnaround from just a few weeks ago has everyone optimistic that Ellie could fall in the 50% category that does not require a transplant, but what we've learned from our experience thus far is that nothing is certain in the cardiac world.