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
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.