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?