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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.
Read more:
http://livingwithtrisomy13.org/Koogleretal.pdf
© The Hastings Center. Reprinted with permission. This article originally
appeared in the Hastings Center Report, vol. 33, no. 2 (2003),” Editorial
email:
editorial@thehastingscenter.org.
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"I believe that I have never seen
the glory of God and the beauty of humanity more than through the lives of
these babies and children and their parents."
~ E.H.T, MD
San Antonio, TX
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Click here to view many stories, videos and photos from around the world
of children and some adults presently Living with Trisomy 13 |
"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 |
| Physician's Home
Not Compatible with
Life, a diary of keeping Daniel
By Kylie Sheffield
Prenatal
Diagnosis Information Package -
Compiled by Kylie Sheffield (mum of Daniel, full
Trisomy 13) in consultation with families on this web site |
| LINKS FOR PROFESSIONALS FROM
MEDICAL AUTHORITIES |
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Lethal Language Lethal Decisions
By Tracy K. Koogler, Benjamin S. Wilfond, and Lainie Friedman Ross
©
The Hastings Center. Reprinted with
permission. This article originally appeared in the Hastings Center Report,
vol. 33, no. 2 (2003),” Editorial email:
editorial@thehastingscenter.org.
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Intensive cardiac management in patients with trisomy 13 or trisomy 18
Am J Med Genet Part A.
*Intensive cardiac management consisting of pharmacological intervention for
ductal patency and cardiac surgery was demonstrated to improve survival in
patients with trisomy 13 or trisomy 18 in this series. Therefore, we suggest
that this approach is a treatment option for cardiac lesions associated with
these trisomies. These data are helpful for clinicians and families to
consider in the optimal treatment of patients with these trisomies.
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Show Me the Money: Financial Considerations in Responding to Parental
Wishes.
Benjamin S. Wilfond, MD,
head of Ethics of
Seattle Children's Hospital
Watch the Webcast
View presentation (PDF 425KB)
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Noninitiation or Withdrawal of Intensive Care for High-Risk
Newborns
From the American Academy of Pediatrics Committee on Fetus and Newborn
Organizational Principles to Guide and Define the Child Health Care System
and/or
Improve the Health of All Children
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Amniocentesis: The Struggle to Choose
By Wendy Hogarth, Mother to Jared diagnosed with trisomy 13 at birth.
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Post-Viability Abortions
Patricia Lee June, M.D, Pediatrician and PPL board member
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WHAT TESTS SHOULD BE DONE
ONCE MY CHILD IS DIAGNOSED
WITH TRISOMY 13?
By Christine Nelson MD, Pediatric Hospitalist
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The parents' journey: continuing a pregnancy after a diagnosis of Patau's
syndrome
By Louise Locock,
senior qualitative researcher,
Jane & Jon Crawford,
parents of Benjamin
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Values in End-of-Life Decision-Making: Some Implications for People with
Disability
By Jennifer Fitzgerald , Barrister of the Supreme Court of NSW.
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Giving Terminally Ill Babies and Their Families an Alternative to
Abortion
By Liz Townsend
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PRENATAL
DIAGNOSIS: FEARS & EXPECTATIONS
by Agneta Sutton, Head of Research
The Centre for Bioethics and Public Policy
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Post-viability abortions
by Pediatrician Patricia Lee June, M.D.
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Clinical Case - Patau Syndrome and Perinatal Decision Making
Ethics Journal of the American Medical Association May 2005, Volume 7
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Trisomy 13 Facts
&
A Guide for
Professionals
From the Support Organization for Trisomy 18, 13 and Related Disorders
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A
Different Kind of Crisis Pregnancy: When There is “Bad News” About Baby
By Monica Rafie
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Understanding Grief: A Component of Neonatal Palliative Care
By
Tricia L. Romesberg, MSN, CNNP
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Disability
Matters - Blog - Institute for the Study of Disabilities & Bioethics Dr.
Mark Mostert, from Johannesburg, South Africa, is co director of Regent
University’s Institute for the Study of Disability and Bioethics.
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| Articles on Eugenics, Ethics,
Selective Abortion, Selective Induction and the killing of Disabled Children |
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Personal Qualms Don't Count: Hospital Forces Nurses To Participate In Genetic
Terminations
by MARNIE KO
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ESSAYS BY TRISOMY 13 PARENTS
Free
literature to share with your patients |
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WHEN WHAT SEEMS BROKEN IS
PERFECT
By Barbara Farlow (Annie's Mom)
The decision to accept
disability:
One family’s perspective
By Barbara Farlow BEngSci MBA
A Letter to: Pediatric
Physicians, OB-Gynecologists, Geneticists & Healthcare Providers, from ThereseAnn - A parent of a
Trisomy 13 child
How Our
Babies have changed our Lives
by Maria Demers
A Mother's
letter to newly diagnosed Families
(Printable to have on hand in your office to give to patients) by
Julie Sexton
Message to
All Obstetricians & Perinatologists
Message to All Physicians,
Specialists, and Doctors Alike by Mary Mabeus
Letters to Physicians
-Trisomy 13 Survival Tactics
-Patients
Plan of Care - Faith in Action
-Considerations in Making a
Specified Plan of Care
by Janina E. Arritola
How can anyone say that
these children do not contribute to society, therefore what is the point?
by Melissa Roy
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| Website & Articles for Surgical Procedures for those opting for medical intervention for specific abnormalities.
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What is an Omphalocele?
The method of delivery will be discussed with you as the
time gets closer. The method of delivery is dependent on the
size of the omphalocele. If the size is quite large and
especially if the liver is involved, the doctor may prefer
to do a cesarean section (c-section) to avoid the risk of
injury to the liver. Otherwise, the preferred method of
delivery is vaginal."
Decompressive cranioplasty may improve the clinical symptoms
of children with mild trigonocephaly and intracranial pressure:
report of 56 patients - June 5 2004
Mild trigonocephaly with clinical symptoms:
analysis of surgical results in 65 patients
- June 5 2004 |
| Termination, Abortion the only choice?
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(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
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"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
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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
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This is a portion of a speech given by Eagle Forum Alaska President,
Debbie Joslin on the capitol steps, January 22, 2008
Full Story |
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Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
Translation