We get many communications from other parents, here is an email from yesterday: "I have read through Sasha's website and your blog and cannot begin to tell you how much it has touched me. The fact that my youngest, Laine, is the same age almost exactly as Sasha makes it particularly close to home - no parent can imagine losing their child and I definitely cannot imagine being able to handle such an experience with the grace, strength and courage that you have. May you be able to take some comfort in know that you did all the right things for her and that the world is a better place for her having been here even for such a short time."
Laine is such a beautiful name, it comes from the old English literally means a lane or "path". Sasha's experience was a journey where the path at times was unclear and perhaps every parent has to construct their own path.
Our "laine" is to honour Sasha. We think one way I can do this is by asking how we construct this path together, to speak about the guides that help us break ground, untangle a thicket of questions, hold a candle in the night, disperse the mist as the sun breaks through the night. These special guides are doctors and nurses and counsellors and a special group in palliative care who talk about death in a place focused on life.
We are so grateful we had Sasha and we know the world is a better place for her presence in life and in death. We know she touched so many; her love overflowed; her struggle inspired. This is enough. To look for more purpose is not necessary but I think it is natural to ask: what was learned? How can parents be helped more?
On the surgical side, as Sasha's heart was repaired, improving blood flow, her liver unfortunately deteriorated and I explore this more in a separate post. Sick Kids saves kids who come down with extreme diseases by quick diagnosis and advanced care and ongoing treatment. To a parent this is where science approaches the miraculous, their kid is fixed, there will be followup however life continues. Sasha and others fall into a different category of extreme medical reengineering where there is time to ponder the route to take, to involve the parents in very difficult decisions about life and death. As surgical boundaries expand and more difficult cases are taken on, they raise questions for us all.
What is the place of the dying at Sick Kids? What marks the time when we transition from living to dying? Where is the home for the dead at Sick Kids?
A critical juncture for children with congenital conditions is the first decision to intervene. This difficult discussion in our case was sensitively undertaken by Sasha's cardiologist. Dr Russell showed us what Sasha's heart looked like (she was not yet diagnosed with Alagille Syndrome) , she explained the condition was severe, she asked the surgical team if they felt they could help and the team agreed to try help Sasha, agreed that they could so something. Dr Russell and Dr Van Arsdell explained there were no guarrantees naturally. The future was uncertain. When we returned again and again to how much time Sasha might have it was clearly explained that no one knew, that what Sick Kids offered was a surgical plan that would consider all the information to best help her. The doctors offered best medical knowledge and a logical and consistent framework for us. They gave us hope.
The councelling of the parent as they decide to embark on a series of surgeries possibly over many years is a very critical juncture because the building of a framework for understanding a surgical plan starts to build momentum. Once you build momentum, should we not empower the parent also to feel they can stop the process? Part of us did not want the second surgery to happen however we were not of the mind to slow down the surgical plan.
Helping parents see the choice in all its complexity to fully understand the decision, the impact on them, on their family, the balance of benefit and risk and cost, however surely also requires considering the alternative to the surgical plan. I am not sure this is the doctor's role. So what if another person were to now enter and help the parents explore. Our hardest realisation was that Sasha was not going to be "fixed" and the decision coming out of that realisation was to take Sasha home and stop the transfusions. To realise that every transfusion was the putting off of a decision, while Sasha was marginally reduced each time, her body slightly less able to heal itself. We came to the decision to end transfusions with the help of councellors at The Tammy Letner Centre after two years. We think the special expertise of palliative care should be brought to bear at the beginning, not at "the end".
We also have to ask Sick Kids, where do you celebrate the dead? As you walk into Sick Kids you may see a big poster with a beautiful smiling infant and the slogan "Imagine every child healthy". Does "healthy" describe the organ transplant and cancer heroes? Can we imagine the very sick kids who move from surgical to palliative care and whose lives are still immeasurably impacted by Sick Kids.
As you walk further you get to the Jim Pitblado footsteps and can see young feet skipping along the colourful shoes. The walls celebrate the generous donors. There is a call to recognize the silent heroes, those whose death provide organs and life to others. Can there not also be a place to remember the dead and all they contributed?
Can we grow a peach tree for all the peaches? Beside the computer allowing donations, is there a place for a computer that celebrates the souls who leave their bodies behind at Sick Kids. They were treated well by Sick Kids, so they will revisit.
Surely the dead need a small physical home at Sick Kids? Surely we improve the experience of the living if the dead have a bigger place in the realm of ideas that frame parents' decision making?
You might have touched on a very important point in the care and medical outcome of a very sick child. The palliative counsellors should come into play at the beginning along with the surgeons to give parents the alternative viewpoint; what to expect if we do not go thru with the surgery?
ReplyDeletePerhaps with the funds that are created with Sasha's donations the palliative care unit could consider a 'decision room' area that would educate parents and tell stories of children who went home and died peacefully without futher intervention. Have some graphic stories like Heather's slideshow, this blog and others to comfort parents along in their decisions. Have this as a mandatory step along with counsel of the many doctors and surgeons so the parents can feel more at ease making a decision to go home; everyone's first instinct.