Often times many would view a page titled 'Ethical Issues' on a site such as this as containing an argument about the morality of abortion. However, this website strives to provide both sides of the argument, rather then just giving a biased personal opinion regarding the situation.
Of those conceived with Patau Syndrome (diagnosed or un-diagnosed) up to 95% never get the chance for life as the severity of the physical repercussions of this chromosomal abnormality cause a miscarriage or spontaneous abortion.[1]
After birth, of those born with Trisomy 13 90% die within their first year of life, with the median survival time at a mere seven days.[2]
However, what of those that survive longer then that first year of life, what becomes of them?
Trisomy13Archive.com provides a place for those parents of children diagnosed with trisomy 13 can come together and share in the comfort of each other as well as provide updates regarding the accomplishments of their children.
"We believe each new life is a precious miracle and encourage growing in love to embrace life from conception to natural death."[3]
Not only that but this website includes 101 children & adults living with Trisomy 13, proving that there are some that can beat the odds.
Through browsing this site I was able to discover a number of survivors of Trisomy 13 and the success that many feel in each of their accomplishments.
In the below youtube video Max Andrew Kroeker, born 14/04/07, at almost 18 months old has beaten the odds of life and has learnt to walk without any support.[4]
Of those conceived with Patau Syndrome (diagnosed or un-diagnosed) up to 95% never get the chance for life as the severity of the physical repercussions of this chromosomal abnormality cause a miscarriage or spontaneous abortion.[1]
After birth, of those born with Trisomy 13 90% die within their first year of life, with the median survival time at a mere seven days.[2]
However, what of those that survive longer then that first year of life, what becomes of them?
Trisomy13Archive.com provides a place for those parents of children diagnosed with trisomy 13 can come together and share in the comfort of each other as well as provide updates regarding the accomplishments of their children.
"We believe each new life is a precious miracle and encourage growing in love to embrace life from conception to natural death."[3]
Not only that but this website includes 101 children & adults living with Trisomy 13, proving that there are some that can beat the odds.
Through browsing this site I was able to discover a number of survivors of Trisomy 13 and the success that many feel in each of their accomplishments.
In the below youtube video Max Andrew Kroeker, born 14/04/07, at almost 18 months old has beaten the odds of life and has learnt to walk without any support.[4]
Max is not the only one to have beaten the odds and proven that they can live a normal life.
Below is the story of Tenecia Hargrave, born March 6th 1982, as told by her mother Petual C. Hargrave:[5]
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.
Tenecia beat the odds and received a true chance at life, living on far past her first week as projected by the doctors.
Below is the story of Tenecia Hargrave, born March 6th 1982, as told by her mother Petual C. Hargrave:[5]
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.
Tenecia beat the odds and received a true chance at life, living on far past her first week as projected by the doctors.
On the other hand however, many would choose to attempt to lessen the grief by terminating the foetus through direct abortion or induced labour.
Of those that do survive, many are too mentally or physically disabled to provide anything back to the society in which they are raised. However, that does not mean that they themselves are a hindrance to society. Instead, their reliance on the ability of others to care for them opens up a number of job opportunities for medical practitioners and caregivers.
While they themselves may never actively contribute to society their lives and the constant battle and struggles that they deal with can serve as an inspiration to those around them.
The United Nations Convention on the Rights of Persons with Disabilities strives to minimize the discrimination aimed at those with disabilities or those affected by a disabilty (ie. caregiver). The International Federation of Social Workers estimate the number affected by a disability either personally or as a caretaker at 25% of the worlds population or approximately 750 million people.[6]
However, many still viewers disabilities as a hindrance on society and before the lives of those suffering from a disability and the family of these people the implicit attitudes of our society must change.
Of those that do survive, many are too mentally or physically disabled to provide anything back to the society in which they are raised. However, that does not mean that they themselves are a hindrance to society. Instead, their reliance on the ability of others to care for them opens up a number of job opportunities for medical practitioners and caregivers.
While they themselves may never actively contribute to society their lives and the constant battle and struggles that they deal with can serve as an inspiration to those around them.
The United Nations Convention on the Rights of Persons with Disabilities strives to minimize the discrimination aimed at those with disabilities or those affected by a disabilty (ie. caregiver). The International Federation of Social Workers estimate the number affected by a disability either personally or as a caretaker at 25% of the worlds population or approximately 750 million people.[6]
However, many still viewers disabilities as a hindrance on society and before the lives of those suffering from a disability and the family of these people the implicit attitudes of our society must change.
REFERENCE LIST:
[1] Danielsson, K. (2014). Patau Syndrome (Trisomy 13). [online] About.com. Available at: http://miscarriage.about.com/od/onetimemiscarriages/p/patau.htm [Accessed 17 Aug. 2014].
[2] Rasmussen, S., Wong, L., Yang, Q., May, K. and Friedman, J. (2003). Population-based analyses of mortality in trisomy 13 and trisomy 18. Pediatrics, 111(4), pp.777--784.
[3] Trisomy 13 Archive, (2005). Living with Trisomy 13. [online] Available at: http://www.trisomy13archive.com/index.htm [Accessed 17 Aug. 2014].
[4] Youtube, (2009). Max K walks hands-free!. [video] Available at: https://www.youtube.com/watch?v=KDk0z7nnVvg [Accessed 17 Aug. 2014].
[5] Trisomy 13 Archive, (2007). Tenecia Hargrave - Trisomy 13 Prenatal Album. [online] Available at: http://www.trisomy13archive.com/albums/album75.htm [Accessed 17 Aug. 2014].
[6] International Federation of Social Workers, (2012). People with disabilities. [online] Available at http://ifsw.org/policies/people-with-disabilities/ [Accessed 17 Aug. 2014].
[1] Danielsson, K. (2014). Patau Syndrome (Trisomy 13). [online] About.com. Available at: http://miscarriage.about.com/od/onetimemiscarriages/p/patau.htm [Accessed 17 Aug. 2014].
[2] Rasmussen, S., Wong, L., Yang, Q., May, K. and Friedman, J. (2003). Population-based analyses of mortality in trisomy 13 and trisomy 18. Pediatrics, 111(4), pp.777--784.
[3] Trisomy 13 Archive, (2005). Living with Trisomy 13. [online] Available at: http://www.trisomy13archive.com/index.htm [Accessed 17 Aug. 2014].
[4] Youtube, (2009). Max K walks hands-free!. [video] Available at: https://www.youtube.com/watch?v=KDk0z7nnVvg [Accessed 17 Aug. 2014].
[5] Trisomy 13 Archive, (2007). Tenecia Hargrave - Trisomy 13 Prenatal Album. [online] Available at: http://www.trisomy13archive.com/albums/album75.htm [Accessed 17 Aug. 2014].
[6] International Federation of Social Workers, (2012). People with disabilities. [online] Available at http://ifsw.org/policies/people-with-disabilities/ [Accessed 17 Aug. 2014].