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PRINT LETTER |
June 28, 2007 |
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 “Your
baby has Trisomy 13. It is a syndrome incompatible with life”………….
I will never forget hearing those words, that day back in October. It was
the 26th to be exact. I remember feeling as though all of my blood was
draining out of me. Coldness ran through my veins. I could not take another
breath.
I felt as though I had just left my body. It was an altered state that I do
not have the words to describe.
All of the hopes and the dreams that I had for my precious baby and I were
gone.
I would never rock him to sleep. I would never nurse him. I would never see
him smile, hear him laugh, or even cry. I wouldn’t see him shudder as he
tasted his very first food. I would never see him sit, crawl or walk. There
would be no first day of school. There would be no graduations. I would
never kiss a boo-boo. I would never meet his first girlfriend, see him get
married, or hold his babies in my arms.
These are the things that I looked forward to doing with Bennett-Chadlen,
from the moment I found out that the pregnancy test was positive.
I imagined that at this time, right now, that I would be working in my
flower gardens with Bennett-Chadlen in his carriage next to me. He would be
3 months old tomorrow.
Trisomy 13 is not always incompatible with life. There are many survivors
that do go on to have “a quality of life”, and their families “have a
quality of life”. Sadly, many won’t hear about these stories when the
dreaded words of the diagnosis are delivered to their ears.
I have heard from many families of “living” Trisomy 13 children, of various
ages; ranging from the single digits, into the double digits to the 40’s.
Yes, that is correct. We know of a woman that is now in her late forties.
How many do we not know about?
These parents are proud to report that their children are happy, and
thriving, despite the poor prognosis that was also delivered to them in the
beginning. I have heard stories of potty training, learning to crawl, taking
their first steps. I have heard about the various ways in which these
children have been taught to communicate. They understand so much more than
many medical professionals believe that they will. If taught how to
communicate, these children are capable of showing us how much they know,
what they are thinking, what they are feeling, and what they are wanting or
needing.
I’ve seen photos of smiling faces in strollers, or while sitting on their
siblings laps, and even on horseback. I’ve seen videos of children swimming
and laughing, singing, and rolling over. The list goes on.
Many survivors attend school. Like other children born without a chromosomal
abnormality, they have their favourite movies, television programs, and
toys. They smile and laugh. They sing. They learn!
Most importantly they evoke such joy in the lives of their family members,
and others that know them. They evoke compassion and love in so many of us,
without us ever having met them.
How can anyone say that these children do not contribute to society,
therefore what is the point?
Do not assume that there is endless suffering in the lives of these children
and their families. Do not assume that they are such a burden that caring
for them takes away a quality of life to those that they live with. Do not
assume that their parents wish they could trade them for a healthier child.
I have not heard from a parent yet that wishes their child had not been
born, regardless of the outcome.
No parents want to see their child sick. No parent wants to see his or her
child in pain. No parent wants to force his or her child to live with
sadness. Trisomy parents are no different.
I honestly feel that the medical professionals believe that they are doing
what is in the best interest for all involved by suggesting to expecting
parents to “allow nature to take its course”. I believe that they feel our
children will live with such a poor quality of life, that it is not
ethically or morally correct to force life upon them by treating them with
the same medical intervention that would be given to a non-trisomy child,
either at birth, or later in life.
I believe that due to the lack of current research and data available to the
medical professionals, ie….obstetricians, midwives, perinatologists,
neonatologists, pediatricians, geneticists, genetic counsellors,
bioethicists…etc…there will always be this false idea that Trisomy children
are incompatible with life, have failure to thrive, and that they are
medically futile most of the time.
As long as this is the belief of the medical professionals involved with the
diagnosis and deliverance of the prognosis, many parents are kept in the
dark about the truth. Many parents are offered termination, and due to lack
of accurate information, sadly many parents choose this, only to find out in
the future that some of these babies do survive. When these parents go on to
read the stories of the survivors, or the stories of parents like me that
have chosen to give life to our children, pursue life-saving treatment, and
be with them until they leave this earth, they live with extreme sorrow and
regret. Many times they wonder if they did the right thing. Many times there
is anger with themselves, and the medical professionals. When the shock has
worn off, and they realize what has happened, they have to live with those
choices.
Parents need to be given accurate medical information that covers all
options. It often is not the grief that is difficult to overcome, it is the
guilt that comes with feeling that perhaps something more should have been
done.
Physicians need to accept the parents right to choose life, and support that
decision 100%. No one should ever have to fight for his or her children to
be given medical treatment, if that is what the parent wants. It should be
offered, and NOT have to be pursued.
Bennett-Chadlen’s brothers are grateful to have met their baby brother. They
thank God for him each night in their bedtime prayers. They say ‘Goodnight”
to Bennett-Chadlen, tell him they love him, and blow several “Angel Kisses”
his way.
Our lives have been forever changed in a very positive way by his existence.
He may not be here in a physical form, but he will always live on in our
place of favourite memories.
My sons will grow up with compassion in their hearts for the vulnerable
amongst us.
Most of all, they will be proud of their mom for allowing their innocent
baby brother to come into this world, against all the adversity surrounding
his prenatal journey.
Life is precious regardless of the package it comes in. Respect it. It is
not ours to take away.
Sincerely,
Melissa Roy—Proud mom of Bennett-Chadlen Roy,
who blessed us on Earth for 8 glorious days and 9 months before that.
Forever in our hearts, forever in my soul.
Born at 40 weeks gestation on March 29, 2007.
Grew his wings on Good Friday, April 6, 2007.
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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.
|
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