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Katie
is available for immediate support
(360) 835-3308
Click here to email
MySpace Page
Click here for
Katie’s letter to the clinic who performed her abortion. Early in November of 2003 we had found out
that we were 10 weeks pregnant....WHAT A WONDERFUL SURPRISE. We had an
ultrasound done and at that time everything "looked" to be ok. About 1 month
later I started having severe pains and we went to the emergency room at 7
pm on the evening. We did not return home until 4 am the next morning. While
in the ER we had an ultrasound done. The tech found a 2 blood vessel
umbilical cord and massive cysts on his tiny kidneys. At that point they
said don’t worry to much just set up an appointment with a Perinatologist
and schedule another ultrasound.
We decided to do it after Christmas because we had a 2-year-old daughter and
we wanted to make her holidays happy. Well the morning of December 26, 2003
rolled around; we got in the car and went to the hospital, which was about
an hour away from our home. We sat in the waiting room for about an hour
waiting, as the family before us had some troubles also. We finally got in
their and we had a talk with the genetics counselor, she explained that as
young as we were it was VERY unlikely that anything serious could be wrong.
We talked to her about 30 minutes before we went in to the ultrasound room.
I was scared but little did I know my world would soon come crashing down.
When the tech started she looked at his umbilical cord, which had 2 blood
vessels instead of 3, then she looked at his tiny kidneys, which we knew
there were already problems there, massive cysts that pretty much covered
the entire kidney. Then she looked at his heart "white spots" they called it
otherwise known as heart defects. She then looked at his spin and his hands
she didn't say much at all.
Then she went to his tiny beautiful
face......distorted I could see that plain as day. Our baby boy had a cleft
lip and palate. I was devastated at that point I LOST IT! All I could do was
cry; I knew this baby had no chance at a "normal" life.
We went back to genetics counselor office and she explained what she thought it could
be and told us what everyone has heard "incompatible with life". She told
us, “he would live no longer than two days”. We had some difficult
decisions to make.
We had chosen to have a termination due to all the pressure from the
doctors/genetic counselors/professionals. Also at that time it was all we
knew to do. No one gave us any information and we had no access to viable
information. WAS GOD PUNISHING US I HAD WONDERED?????
We had planned the D & E for January 4 2004. So on January 2 we went in to
have the first sent of Laminara inserted. The next day a huge ice storm hit.
We had to wait 10 long miserable days to get back to the clinic (LOVEJOY
SURGI CENTER). When we went back we had to start the laminara process al
over again. It was completely miserable, I had contractions.........small
ones they felt like Braxton Hicks. Then that terrifying morning came January 14, 2004. We went to the clinic at 6 AM, by 6:30 the procedure was over. My
baby was gone, we never saw him, we never kissed, we never hugged him.
Sometimes I wonder if I had taken the pregnancy to term (or as far as my son
would make it), if he would have had a chance at life like some of these
children. Maybe if the professionals we had talked to would have 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, after all do they really know the after pains we go through?
NO!
We had an autopsy done on his tiny body...his tissues and cells showed the
rare chromosomal disorder "Trisomy 13, Robertsonian Translocation". This
society is so cruel, people do not except the ones who do not turn out to be
what people would call "normal".
A poem that I really love:
Written by Kaye DesOrmeaux
My mom is a survivor
Or so I've heard it said.
But I hear her crying at night
when all others are in bed.
I watch her lie awake at
night and go and hold her hand.
She doesn't know I am with her
To help her understand.
But like the sands on the beach
that never wash away.
I watch over my surviving mom
who thinks of me each day.
She wears a smile for others
a smile of disguise.
But through Heaven's door
I see tears flowing from her eyes.
My Mom tries to cope with death
to keep my memory alive.
But anyone who knows her
knows it is her way to survive.
As I watch over my surviving mom
Through Heaven's open door.
I try to tell her
that angels protect me forevermore.
I know that doesn't help her
or ease the burden she bears.
So, if you get a chance, go visit her.
And show her that you care.
For no matter what she says
no matter what she feels.
My surviving Mom has a broken heart
that time won't ever heal.
In loving memory of AUSTIN REED
We love you sweet baby and we always will.
Some day we will see you.
Until then fly above and watch over us.
Sincerely,
Katie
available for immediate support
(360) 835-3308
Click here to email

New Sibling - Alexis Kaylee - We had a normal pregnancy with her. She was
born October 29, 2005 @ 9 lbs 9 oz and 21 1/2 inches long. She was born with
no problems at all, completely healthy.

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| 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
- - -
"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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Click here to
download printable LivingWithTrisomy13.org "awareness cards." |
Living with Trisomy 13
Focused on prayerful support and gifts of love
to those touched by a Trisomy 13 child.
Inspired By An Angel
Attn: LivingWithTrisomy13
15802 Springdale St.. #68
Huntington Beach, CA 92649
info@LivingWithTrisomy13.org
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Text and graphics ©
LivingWithTrisomy13.org 2005-2007
All information found on this site was submitted to
us directly by the families and used on this site with their permission. |
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Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela
Sullivan 2004, used with permission. |
If We Hold On Together Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.
Used with permission.
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*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy
13 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. |
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Looking for ALL families who’ve had a trisomy child of any number.
Whether you terminated, miscarriage, had a stillbirth, live birth -
living or deceased. Including adoptive and Foster parents. Please fill
out the
TRIS survey
to help update the medical literature and to improve the quality and
availability of medical care. Tracking Rare
Incidence Syndromes (TRIS)
Click here to add your information |
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