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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

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LivingWithTrisomy13.org


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A Story of Regret

 

 

  Laurie-Beth is available for immediate support CA California
*82-1-510-744-0512   Click here to e-mail
Registered nurse (RN) with specialties in Labor and Delivery and Neonatal Intensive Care. Perinatal Hospice, Palliative Care Coordinator and Certified Grief Counselor.
 
Perinatal Hospice
 is often misunderstood by families...Many feel that choosing hospice care means giving up on their child. The Perinatal hospice approach is to walk with the parents through their journey after receiving a difficult diagnosis during their pregnancy, and to help the parents to deal with that diagnosis in the way they feel is best...This can mean anything from choosing to withhold any life saving measures to developing a palliative care plan with the family...

In 1997, after so many years of infertility treatment, my husband and I finally got the news we were expecting, only to find out after my amnio that our daughter had a complete trisomy 13.  We were told she would not survive until term, that I should terminate my pregnancy.  My OB, the Geneticist, the Perinatologist, my son's Pediatrician, everyone I spoke to said I had to terminate my pregnancy, and at 18 weeks it had to be now.  
 
I was adamant I could not live with the decision, but my husband had listened to all the advice and agreed that it was for the best and pushed hard for me to terminate.  We were told she would not live, that she would suffer unbearably if she made it to term, and I was being selfish to want to keep her, so I agreed.
 
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 - Serena Brianne, we named her.  There is not a day that goes by that I do not think of her or feel she was sent to me for a reason, and feel guilty for giving up on her - because she didn't give up.
 
We have since been blessed with another little girl, Eilish Ann.  She is perfect in every way, but she can not replace the daughter I have lost, or ease the pain that doesn't seem to every lessen.
 
Your message is so important.  Had I read these things nine years ago, I would have never listened to anything other than my own heart.  A mother's heart always knows what is best for her child.  Maybe she would not still be with us, but that would have been her choice, not mine, not theirs.  You give hope to those who have been told there is none, and a way for them to hear what is most important...the truth.
 
Thank you,
Laurie-Beth *82-1-510-744-0512 CA California

 
 

 
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

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

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

 

 

All text and graphics © LivingWithTrisomy13.org 2005-2010 - all rights reserved
Use prohibited without permission
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 (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.
 
 

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