This article highlights how Annie’s mom, Barbara Farlow, has been inspired by her daughter’s death at three months, three years ago, to find out what happened, and warn and help others. She’s concerned Annie did not get the care she needed:
Annie had a chromosome disorder that would have affected her development. Her family, including two brothers and two sisters, knew all about it long before she was born.
They knew she might not live into her teens, talked about the inevitable challenges and sacrifices and welcomed her into their lives. …
Among other things, the family questions what drugs were used and how a “Do not resuscitate” order was issued without their informed consent.
That’s an astounding oversight. How does a DNR get issued without the family knowing? I hope Barbara gets the answers she deserves on this. We can’t pretend this has nothing to do with abortion, either. Many babies with problems like Annie’s are aborted first thing. It can’t help but seep into the psyche that these kids won’t have a high “quality of life” and that they would be “better off dead.”
by 
Once a society or nation allows abortions of unborn baby children that society and nation has gone down the most ominous slippery slope that it can go down. A veritable pandora’s box has been opened with no end in sight.
This article quite clearly shows and proves beyond a shadow of a doubt that no life is ever truly secure again especially if it may be a life that won’t have a high quote “quality of life.” Mankind does a lousy job trying to play the role of God.
Hopefully Barbara will get the answers she deserve because every single human life has great value in the eyes of God despite what the world considers to be major disabilities.
I would like to contribute to your comments, Andrea as the STAR story is about me and my daughter Annie.
What is significant about our experience, and why we have pursued things to the degree that we have is because of the implications and indications of the events.
It is easy to dismiss the whole affair with, “well, trisomy 13 babies don’t live long and they are severely disabled anyways.”
In fact, there is a vast range of manifestations of any genetic disorder and Annie was mildly afflicted. We had done a great deal of research before her birth and had even discussed policies and whether our daughter would be eligible for surgery, should it be required.
Annie was born full term, with Apgars of 8 and 9 and normal tone, power and reflexes. That is pretty amazing for a baby with trisomy 13.
It would be acceptable if the physicians had explained their plan of treatment, and we have provided input and discuss it, with the mutual goal of “best interest” for Annie. If there was a disagreement, the bioethics service would become involved. Eventually, if disagreements persisted, the policies outline the involvement of others and they could have taken the matter to the Consent and Capacity Board, had they wished. (the irony is that we had such respect for the physicians that matters would never have gotten that far; we just wanted to be partners in our daughter`s care)
The issue is the covert withholding of a diagnosis for (what we have since discovered) were critical indications of impending respiratory failure which existed for most of Annie’s short life. We were certainly given to the belief that all was being done in the same way as any baby.
The final 24 hours involved a DNR without informed consent and missing narcotics and a missing medication report.
Nobody (hospital or coroner) has ever explained why/how Annie died and why she could not be helped.
The coroner wrote that a forensic audit of the narcotic cabinet revealed that nothing was done to bring about Annie’s death. We asked, “Where did the 20 mg of Morphine and 100mcg of Fentanyl, that were removed from the cabinet in the final hours without a doctor’s order go to? Where is the final medication report?” The response was, “the matter is closed.”
Annie’s story was told at the U of T Joint Centre for Bioethics. We are immensely grateful for the support of the ethics community.
It is at
http://epresence.ehealthinnovation.org/archives/2008_jun11_633488010617968750/?hideSocial=false&archiveID=255
We have to start asking more questions, as a society, about genetic terminations, informed consent and the effect of the majority`s choices on treatment options offered to newborns who have conditions that are thought to be `preventable`via prenatal detection and termination.
Today it is trisomy conditions but the intensive efforts and investment of the huge Biotechs suggest that there will be many more conditions and that all it will take is a blood test for a definitive (non-invasive) diagnosis. It is imperative that we debate these issues and ensure that an ethical, non eugenic framework is in place for the future.