If you are a Trisomy 18 or 13 parent, you may not be able to hear the words, "Merry Christmas" from your child. If you listen and watch, you may hear and see it in different ways - a smile, a gesture, a sound, This Christmas, on behalf of your child, I want to say thank you for the greatest gifts of all - the gifts of life and love. When it comes down to it, what could be more meaningful than these? Merry Christmas and all the best in 2020.
When a medical definition does not reflect reality, which needs to change - the definition or the reality? Definitions directly impact the actions of medical providers and their patients. Take for example, this definition of Mosaic Trisomy 18 by the nhs.uk
"... such as mosaic or partial trisomy 18, do survive beyond a year and, very rarely, into early adulthood. But they are likely to have severe physical and mental disabilities."
Is this true? No! There are a number of successful individuals with Mosaic Trisomy 18 or 13 who were not even diagnosed until adulthood. Unfortunately, because of this definition, parents are given a very bleak outlook with a strong recommendation of abortion, or refused medical services.
It is true that depending on the organs affected, some individuals will be more severely impacted, but often this is the only narrative that is shared. Can a woman make an informed decision when accurate information is withheld?
Do you think that it is time to change the definition that "we very rarely" make it to adulthood and are "very severely physically and mentally" challenged? I would love to hear your thoughts.
A lot of misinformation around Bill 207 stated it would prevent patients from accessing services. Many "hypothetical" cases were presented about what may happen if a physician with a belief system withheld services. The voices that were the loudest could not point to an instance where withholding of services ever occurred.
Unfortunately, this is not the case in the Trisomy 13 & 18 community where strongly advising women to abort against their wishes, placing a DNR without the parents' consent, implementing a slow code, or withholding accurate information and services are common practices.
Parents of a child with Trisomy 18 or Trisomy 13 know too well the horrors of being told their child is not able to receive medical services because of a label imposed on them.
How sad to hear opponents feel that those who stand up against this type of genetic discrimination should be silenced and forced to be involved in these practices. If they are not able to stand up for us, who will?
On Wednesday, October 9th, I was able to speak to approximately 150 Year 2 Medical Students at the University of Alberta. I was joined by Andrew Siebert, and the Thenhaus family by Skype. The feedback was very positive. Here are some of the comments. Together, we can change the dialogue!
My background before medical school was actually in genetics and I feel somewhat misled by my education. Statistics don't tell the whole story, and I'm grateful for the opportunity to hear you speak. My heart and my mind have changed for the good.
Thank you for coming to present. It was truly an eye-opening presentation . My understanding of Trisomy 18/13 was limited coming into this presentation and you have inspired me to do further research into this .
Thank you so much for this presentation. You opened my eyes to the reality of this topic. This was the highlight of my medical career so far!
Thank you so much for sharing your story!!! I have completely changed my perspective towards Trisomy children.
Thank you for coming today and inspiring me to become a physician who is consistently empowering, optimistic, proactive, and supportive towards my patients and their families regardless of statistics that we have been taught..
My mother has been in contact with someone in Saskatchewan who is carrying a child with Trisomy 13. The doctors will not monitor her child, refuse to assess the child once she is born, and will not provide any medical treatment for this child. This is because Trisomy 13 & Trisomy 18 are considered to be "lethal". Do you think this is right?
This weekend I spoke at the Canadian Physicians for Life Conference in Calgary It was great to see so many doctors who feel that children with an extra chromosome are valuable. Many were very surprised to hear a different side of the story. Great to be