Friday, 11 October 2013
The Grief that Can't be Spoken
When I attended the infertility conference last year, I was looking forward to a lecture from a lawyer on ethics. I was hoping the speaker would touch upon the American Society for Reproductive Medicine (ASRM) guidelines regarding when to withhold infertility treatments as I've seen some questionable cases and have been involved in some difficult situations myself (topic for another post). Instead, she spoke about the Pandora's box that has been opened with IVF and embryo storage with regard to posthumous parenting.
Her talk was a bit in contrast to a previous lecture, which advocated for fertility preservation in young men and women who are diagnosed with cancer. She mentioned some cases from her files where parents of cancer stricken teenagers were seeking cryopreservation, or other situations where patients had a very poor prognosis and would not likely survive past the birth. "Are we creating babies to extend our grief?" she asked, as she noted that her role is to determine, who will be the intended parents and who will benefit from a posthumous procreation.
She referenced another case that she thought was very straight forward, but contained a strange twist. A couple was in-between FET attempts when the husband died in a tragic accident. The widow tried to proceed with her transfer, but was blocked by an injunction from her in-laws. They presented emails from their deceased son who confessed that he no longer wanted to have a baby and was considering seeking a divorce. (Furthermore, they suspected that his accidental death was actually a suicide) As the embryo storage facility did not have a specific consent form addressing the situation of one partner's death, a judge ruled in favour of the in-laws.
Our first steps to start the IVF process began by confronting our mortality with the storage facility consent forms. I remember during the five minutes of my pregnancy, Husband started talking about creating our advanced directives and a living will to appoint a guardian for our progeny. I stopped the conversation, not that I was any more reluctant to discuss end of life issues than the next person, but I didn't want to get ahead of ourselves before our first ultrasound. I sent a text to Co-worker, "So...Odd request: Can we designate you as our person to notify the embryo storage facility in the event that Husband and I die?" She replied, "Of course. Is it odd that I'm honoured that you chose me?"
As I'm the type of person who likes to introduce a little levity during serious situations, I recalled a rather humourous post from Yeah, Science!. As her clinic required her and her husband to declare their intentions with his sperm in the event of a death, divorce or natural disaster during the window of time between dropping off the sample and the IUI procedure, she asked; "WHAT KIND OF APOCALYPTIC SHIT IS TAKING PLACE IN THE 10-MINUTE DRIVE BETWEEN OUR HOUSE AND THE CLINIC??" It gave me pause to laugh as we completed our forms. The next day I was reminded just how serious and real these situations are. I was attending a meeting at the hospital when I learned of a young woman who suffered a traumatic brain injury in a freak accident. She had given birth to her firstborn just a few months earlier.
It's the grief that can't be spoken. A young man is suddenly a widower and a single father. Parents angrily lamenting that you're not supposed to bury your children. A sweet baby who will only know of her mother through pictures and stories from the many people who loved her. Their pain is unrelenting. As she had noted her intentions to be an organ and tissue donor on her driver's license, her family was able to honour her last request. She gave the gift of sight to someone who is blind. Her kidneys freed two others from dialysis treatments. Her lungs gave breaths to two individuals affected with chronic airway diseases. Her skin will be grafted to help burn victims start their long healing process. Perhaps it's the only possible measure of solace. The only way to grasp any understanding from such a senseless tragedy.
The embryo storage consents are only one step and they only address one aspect. It's time to have the conversation, and then to put the words on paper and get it notarised. This shit is real.