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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

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LivingWithTrisomy13.org

Celebrating MARCH as Trisomy Awareness Month
(March 13th as Trisomy13 Awareness Day)
The LWT13 community supports Ironmanforkids
TRISOMY AWARENESS Active Giving program
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Healthcare Professionals
Physician Comments

 
 
3-6-09
What a beautiful site!! I am a family physician also, studying for my ACLS recertification, and I came across this statement in the Advanced Cardiac Life Support Manual:

Withholding CPR (cardio-pulmonary resuscitation) for newborn infants in the delivery room may be appropriate under circumstances such as the following:
CONFIRMED GESTATION UNDER 23 WEEKS
BIRTH WEIGHT UNDER 400 GRAMS (1,000 gm = 2.200 lbs)
CONFIRMED ANENCEPHALY
CONFIRMED TRISOMY 13
OTHER CONGENITAL ABNORMALITIES INCOMPATIBLE WITH LIFE

Now, I had to see how "incompatible with life" Trisomy 13 actually was, and found your site! As a pro-life physician I was overjoyed to find such love for ALL children sent to earth by God to show US how life is really lived!

As for babies less than 400 gms, or less than 23 weeks gestation, check out:

February 19, 2007 06:09 PM Eastern Time MIAMI--(BUSINESS WIRE)-
World's Youngest 'Miracle Baby' Beats the Odds

Thank you for this site. I will use it for my patients to read as pro-life/abortion situations arise. May God bless your work.

Elizabeth Phalen, MD
Clayton, NC

 
12-1-08
Excellent!
I am a family doctor in Manassas, VA. My wife runs a charity called the House of Mercy, which gives clothing and spiritual support to the poor. Two weeks ago a young woman came through the door looking for a car seat as she was nearing the end of her pregnancy. Yesterday at about 8 months of gestation, she went to the health department for a prenatal visit (only her 3rd). Apparently she was pre-ecclamptic and had an emergent C-section. The baby was born with many abnormalities and the parents were told that she would die from Trisomy 13. I am not directly involved in her care, but the parents called my wife for support.

Not fully recalling all of the details of Trisomy 13 and did a Google search. I stumbled upon your site.
I want to applaud and thank you for the message of hope that you give. I am also enlivened with the Pro Life message that you present. It is rare to see any organization advocating carrying these babies to term in our culture. Lethal mutation leads to abortion is the usual story. Giving these families support when making the difficult choice to continue with a pregnancy with an uncertain outcome is beautiful. The love and connection of holding a newborn, even if only for a few minute, brings a joy and peace to the family that they would not have realized if they had chosen to abort. They would be left then with only guilt and pain.
May the Almighty God bless you in your work
Scott A Ross, MD

 
I am a physician who has had experience caring for little ones with trisomy 13 and other devastating birth defects.  I have also had the immense privilege of caring for babies who died shortly after birth.  I want you to know that NOBODY should ever tell ANYBODY that there is no hope.  It is deplorable for a physician to breath such words.  To say there is no hope is to say there is no God.  There is a God in heaven who actively performs miracles.  Whether or not the miracle we are looking for is the miracle that we see is a separate issue.  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.  Of course you as parents of these sweet peas know that.  I encourage you to find a new physician if you ever again encounter one telling you that there is no hope.  That is simply a  lie.  Blessings to you. Elizabeth H. Tichy, MD San Antonio, TX
9-20-06


 

 

 

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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