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LivingWithTrisomy13.org

Ironman for Kids - The Living with Trisomy 13 Community thanks Michael Hennessey for helping to raise awareness for Trisomy 13 and other related disorders. See Video & Details>

A Story of Regret

 

 

 

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.


 

 
 

 
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
Articles on Eugenics, Ethics, Selective Abortion, Selective Induction and the killing of Disabled Children

Personal Qualms Don't Count: Hospital Forces Nurses To Participate In Genetic Terminations 
by MARNIE KO

ESSAYS BY TRISOMY 13 PARENTS
Free literature to share with your patients

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

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?

(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

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

 

 

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.
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.
 
*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.
 

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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