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Living with Trisomy 13 - Patau's Syndrome

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 Tenecia Hargrave

Born: March 6, 1982

  Norwood, North Carolina (NC) - Full Trisomy-13

 April 14, 2007

My name is Petula C. Hargrave, I have been blessed with a child with Full Trisomy-13.

My daughter was born in Caburrus Hospital, in Concord, North Carolina, March 06, 1982, C-Section.

At the time of her birth I was told that I might as well leave her in the hospital for she was not going to live. I was told that she was born with a hole in her head, but that it was not penetrating her brain. That if she lived it would be for one week, beyond that it would be for a year and she would be in a vegetated state. I was hurt confused and in shock, I did not under-stand what had gone wrong with all of the ultra sound information that I had been viewing during my pregnancy. I had done everything right. I told them that since my daughter was going to die that I was not going to leave her in the hospital, but I was going to carry her home, for I know somebody that they didn't know. Of course they asked who was that? I stated God.

She was in ICU for twelve days being tubular feed. They did not want to show me how to perform this operation, but I insisted. I have a medical background, a teacher and a degree in Social Work; therefore I was shown how and brought Tenecia home on the twelfth day of her life, with a feeding tube in her mouth. My daughter pulled the tube out the second day and my brother who is deceased now, told me that if she pulled it out again not to place it back, but to feed her with
little doll bottles if I had to feed her every hour. Praise God I did not put it back, but did as my brother requested. When we returned for our six weeks check up Tenecia was drinking eight ounces of milk with no problems.

I was also told that her heart would beat as a fifty year old person, but it never did she does not have any heart problems at all. She is mentally delayed, but walks and communicates well with others. She is so loving toward everybody understands what is said to her, but she is not able to articulate as well as you are  I. There is so much more to our story and I have wanted to share it for a long time. The main thing is that my daughter is alive after twenty-five hard years of work from she and I. We could not have reached this goal without God. All doctors are amazed at my daughters socialization skills, and the warmth that they see her project during office visits.

She weights eighty-one pounds and stands four feet and six and one eighth inches tall. She looks like a nine year old child, everything and more can be verified by Doctors.

This is not all of the story by any means please contact if you would like.

E-mail petulalittle@aol.com 
 
Petula

25th Birthday

 


 

 

 

submitted: April 14, 2007

 

Have a child living with Trisomy 13??  We would love to add your child to our Album.
Click here to send us their information. (Please note in the subject area if this is a Trisomy 13 photo as I do not open attachments unless I am aware of the sender.)

 

 


 
 

 

 

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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