Home SEARCH About This Site Site Visitor Comments Website NEWS & UPDATES Contact
Trisomy 13 - Patau Snydrome - Photos, Support and Resources

  Embracing Life - One Moment at a TimeTM


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

please email Vanessa@livingwithtri13.org

A Story of Regret




A Story of Regret

I went in for a normal prenatal check-up whenever I was 18 weeks pregnant. They drew blood to perform my "triple screen" test to make sure the baby did not have any problems. I assumed this would go well being that my first pregnancy results came back perfect. I have a healthy five year old daughter.

I called the doctor's office about a week later because of some questions about back pain, and the nurse was so distraught. They had been trying to reach me for days and couldn't get a hold of me, and needed me to come in to the office immediately. My Triple Screen had come back showing strong evidence of Spinabifida. I went in and got a sonigram and was told nothing by my OB-GYN. She faxed the pictures and notes to a specialist in a larger city, and scheduled my first appointment with the them for the following Monday. Keep in mind, this was a Thursday, so I went home thinking that since my OB didn't tell me anything was wrong, I figured all must be well!

That Monday, Toby and I drove over to Asheville to see the doctor, our hopes high. We went in to the room and were greeted by a sonigram
technician who spent about 30 minutes or more taking pictures of each and every part of the baby. She informed us that we were having a little boy, and Toby was so excited I thought he would float out of the room! As I was laying on the exam table, I was looking at the screen, and then Toby, and the screen, and then Toby just so excited to be having a boy, but as I was glancing back and forth, I began to see the fear on Toby's face. I looked at the technician, as he was watching her pretty intensely. As she was doing the sonigram, she kept making these horrified faces. Her eyes began to tear up, and she excused herself to go and retrieve the doctor.

Only minutes later, the specialist came in and informed us that things were "not good at all". She even began to cry, saying this was one of the worst cases she had seen in all of her years in the field. She proceeded to show us my son's different abnormalities on the screen. An extra finger on his left hand (next to the pinky), a cleft or split lip, only 1/4 to 1/2 of his brain developed, and a blood valve missing in the umbilical cord. My world crashed right there. Anger, resentment, regret, fear and hatred to every healthy human being on this earth developed immediately.

Next, the brought in a Genetic Counselor, who explained that they felt very strongly that my son had a condition called "Trisomy 13". All of his characteristics matched up, and they wanted to perform some tests. I allowed them to do an amniocentesis. They told me that it would be somewhat risky, but thankfully Tristen lived through it. Then they sent it off for a "Phish Test" I believe. After the test was done, the Counselor sat down and told us that there was NO HOPE, that Trisomy 13 was a LETHAL condition. That no human could live with this disorder! I heard the words lethal and not medically or scientifically possible a thousand times!

I noticed over that next week that Tristen didn't kick nearly as much or as hard. Whether it was the stress I was under or the sonigram that did it, I don't know for sure. But for some reason I feel like the hour long sonigram wore him out.

My test results came back after waiting the longest week of my life, and I was told that Tristen did have Trisomy 13 with a Translocation. I
arranged for labor induction 4 days later, and checked in at 6 PM on a Thursday. I requested one last sonigram before the induction. They
happily brought the machine in to the room, and I could see that his heart rate had slightly slowed down, and he wasn't moving nearly as much. I told them to go ahead. They inserted a Cytotek pill into close to my cervix to bring on contractions. I was given Morphine for the pain. Tristen Aiden Brown was born at 2:58 AM, February 2, 2007. He was deceased at birth. I held him and cried. I begged God to let me take his place. I talked to him and told him how wonderful he was, how beautiful, and how lucky to have been able to miss this cruel world and go straight to the arms of the Lord. I admired his tiny feet and hands, and never wanted to let him go. I cried when I finally had to hand him over to the nurses. The hardest thing I ever had to do. What would I give to go back to that day and hold him in my arms again? There isn't enough money in the world. I would give anything, absolutely anything, to be able to do it all over again. I was uneducated about Trisomy 13. I feel as though I was mislead.

Months after his departure from this world, I wandered across this website. While running a search in Google for more information on Trisomy 13, I saw it plain as day, and literally went nuts. "Living with Trisomy 13: Children who are alive and healthy today, living with Trisomy 13." What? What happened to what my genetic counselor said? "Incompatible with Life", "Lethal", "Not possible". Let me just say that I have retrieved all of my medical records and told off who needed to be told. I wish I could go back to that day on the exam table, where that doctor was telling me it was hopeless. What I wouldn't give...

Cara Thornton thorntoncm@hotmail.com
Sylva, North Carolina, (Western North Carolina)



Submitted 10-25-07

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 



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.
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.

Search Specific Languages or Countries