This is the third post in a series highlighting a public dialogue held
at the University of Alberta on October 23rd, 2008, titled The Modern
Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue
was sponsored by the What Sorts Network, in conjunction with the Canadian
Association for Community Living and the Alberta Association for Community
Living. This series will bring forward the videos made of this event twice a
week, roughly every Wednesday and Saturday. For further context, please see
the introductory post in the series, which can be found here; we'll string
together all posts in this series when we have most / all of them up.]
In the following video clip Sam Sansalone begins to share his experiences
fighting to save his daughter, Katya, who was born with Trisomy 13 (a
condition where the child has an extra chromosome 13, for more information
see livingwithtrisomy13.org).
I think you will find this story interesting for two points that Sam shares.
First, there is the issue of medical personnel intentionally withholding
information about the quality of life that children with Trisomy 13 can
expect; an act of deliberately propagating a stereotype. The exact reason
for sharing this behaviour is unclear but it is likely at best a form of
misplaced paternalism and at worst a set-up for point two.
Point two is Sam’s experience with the illusion of choice that can so often
exist in our society, whether inside the medical community or not. In such
situations people are initially presented with the opportunity to make their
own choice about a difficult decision (and typically information to sway
them to a particular side, the tie-in to point one). If the choice falls
inline with what is expected then all is well, there may be a few tears and
some whispered “I know it’s hard, but you’ve done the right things, but
life goes on. BUT if the choice falls outside of what is expected, then you
are clearly not in your right mind, your response is rejected, and authority
for the decision is assumed by whomever gave you the illusion of choice in
the first place.
When the bioethics community steps in, well, watch and see…
Living with Trisomy
13--Part 1
Sam Sansalone
The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life
A Public Dialogue, University of Alberta, October 23, 2008
Living with Trisomy 13--Part 2
Sam Sansalone
The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life
A Public Dialogue, University of Alberta, October 23, 2008
Lethal Language, Lethal Decisions
by TRACY K. KOOGLER, BENJAMIN S. WILFOND, AND
LAINI E FRIEDMAN ROSS
Although many of the congenital syndromes that used to be lethal no
longer are, they are still routinely referred to as “lethal anomalies.” But
the label is not only inaccurate, it is also dangerous: by portraying as a
medical determination what is in fact a judgment about the child’s quality
of life, it wrests from the parents a decision that only the parents can
make.
Neonatal and pediatric critical care have dramatically improved survival for
children over the past twenty years. Neonatologists continue to reduce the
gestational age and birth weight that a newborn must have achieved to
survive, and advances in pediatric surgery and pediatric organ
transplantation mean that complex congenital heart disease and biliary
atresia no longer always result in death. They are no longer “lethal,”
because with treatment, an infant can survive these conditions and even
enjoy a good quality of life.
Yet obstetricians, pediatricians, geneticists, and neonatologists continue
to regard a category of congenital syndromes as “lethal anomalies.” Examples
are trisomy 13, trisomy 18, and anencephaly. Although most professional
discussions do not provide a specific definition of “lethal anomaly,” the
term is generally used to refer to a child with (1) severe neurological
compromise and (2) structural anomalies and/or functional disabilities that,
if untreated, would cause death within a few months. The structural
anomalies in these children include airway malformations, congenital heart
disease, and gastrointestinal defects; the functional disabilities include
swallowing dysfunction, aspiration, and apnea.
These anomalies and disabilities are usually treatable, and invariably are
treated in an otherwise healthy infant. What makes them sometimes “lethal,”
then, is the decision not to repair the anomalies or treat the disabilities
in light of the child’s poor neurological prognosis. In effect, as we will
argue, “lethal anomaly” is not an accurate clinical description; instead, it
serves to convey an implicit normative view about quality of life.
Who would want a child like that?
I am told one doctor said to another about a woman wanting to bear and deliver a
child with known severe disabilities: "But who would want a child like that
anyway?"
March 31, 2009 Canadian Medical Association -
Prenatal
DNA test raises both hopes and worries
“...question whether scientists should even be in the business of cleaning up
the gene pool and have evoked the dreaded "E" word: eugenics.”
“I feel that the genetic testing ultimately determined her fate," says Farlow,
(mom to Annie) who lives in Mississauga,
Ontario. "She was treated as a syndrome. She wasn't treated as a child.”
"What I've noticed, is that kids
with these rare syndromes are very much where children and families that had a
member with Down Syndrome found them self maybe about 60-70 years ago. Where
they were saying, "Don't do surgery on them. the prognosis is poor." But we know
now that many folks with Down Syndrome do very well for themselves. Live on
their own and so on. I'm not saying that will necessarily be the case with every
child with 18 or 13, but we see that the mosaics and partials can do very well.
And given the chance, some of the fulls are now walking and using communication
devices."
Deborah Bruns, Ph.D.,
Principal Investigator, TRIS project - Southern Illinois University
Carbondale
Termination, Abortion the only choice?
(A must read for Physician’s who advise
parents after early testing and prenatal diagnosis) These women share the immense pain a termination has left on their lives.
When counseled by Professionals they were offered no hope. They were not given
the option of carrying to term and holding their child, if even briefly. Nor
offered the compassionate support this diagnosis requires. Instead these women
felt they had to make the heart breaking choice to end their child’s life.
- - -
A Story of Regret - "Maybe if the professionals we had
talked to had given us more information we would have made a different choice.
To this day, I still live with the pain of the choices we made. Trisomy needs to
have a bigger voice and all the professionals need to be more open minded and
not so much on terminating"
~Katie -
Full Story
- - - "It is a choice I cannot live with to this day. I look at these pictures,
read your stories and my heart aches. Since I had a D&E, I never even got to
see or hold my daughter."
~Laurie-Beth Full Story
- - -
After experiencing the effects of an abortion with a previous pregnancy,
Elizabeth shares her experiences with carrying to term a child with Patau
Syndrome - Trisomy 13.
~Elisabeth Slotkin Full Story
- - -
This is a portion of a speech given by Eagle Forum Alaska President,
Debbie Joslin on the capitol steps, January 22, 2008
Full Story
If We Hold On Together Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.
Used with permission.
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy
13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional
familiar with your specific condition. The personal journeys of any parents on
this site are only their opinions and their own journey with having a Trisomy 13
child. You should consult with your own physician or other medical professional
regarding the opinions or recommendations expressed within these pages as to
your own child's symptoms and medical condition.
By Jill, mom to
Translation