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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

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Trisomy13Archive.com


This is an archive of the LivingWithTrisomy13.org site (2005-2010) for current information please see:
http://www.livingwithtri13.org

To UPDATE AN ALBUM
please email Vanessa@livingwithtri13.org

Bess
Florida Licensed - Nationally Certified Professional Midwife

Bess' Bio:

My professional history is as a Florida Licensed and Nationally Certified Professional Midwife since 1997 and I am currently pursuing a degree to work and becoming licensed and certified as a Physician's Assistant.

My personal history is that I am married to Matt and the mother of five children; Ben-10/11/84, Jake-11/28/99, Zack-11/8/07, Chloe-5/10/01 and Emma Grace in heaven-12/2/03 to 12/15/03 who died from Congestive Heart Failure due to Double Outlet Right Ventricle, which was caused by full Trisomy 18. Notice I do not say she died from Trisomy 18, as she did not. The abnormal number of chromosomes, and extra genetic material caused her body to have medical complications.

These medical complications threatened and ultimately took her life. I have made it a personal mission since then to help other families facing the same diagnosis. Mostly because we fought hard to try to get surgery for Emma's heart condition, in order to bring her home and let her have the best life possible and reach her full potential. We had to fight two different hospitals and many different doctors over her almost two weeks of life. We failed and that is wrong, Emma should have been given a chance and without that surgery, she could not survive.

Being in the health care profession, I understand medical jargon, policies and procedures and yet it was the most overwhelmingly difficult situation I have ever faced. From talking to the many different doctors, to making day to day decisions and balancing those decisions with the rest of the families needs, my medical background helped us to get through it. I cannot imagine how difficult it is for those who do not have that background to help. That is where I have tried my best to help other families. Many other families have contacted me over the past two years who just want answers, need guidance, or simply want to know what to do. Although I cannot tell anyone what to do, I can help them to wade through all the medical information and clarify the realities in order for them to make their best decision about their child and family. As a Licensed Midwife, I have been doing that for almost nine years.

We continue to raise much needed funds for research. In addition, my husband and I started the Day of Grace Benefit Golf Tournament and Charity Auction in May of 2004. We have hosted two events so far and continue to raise much needed funds for research.

Bess
midwifehelp@aol.com
(Be sure to include in the subject line Trisomy support)
Phone number available with email request

 

 

 

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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