What is the life expectancy? Each baby charts his/her own course. Is it always fatal?... NOT always, there are many survivors living today with trisomy 18, 13 and other related syndromes (see SOFT Celebrating 25yrs supporting families) Each child presents the expected malformations differently, some can be managed, while some are more serious and decisions will need to be made with the family and professionals. Hundreds, of families share their stories on online support resources. These families have and continue to create change in how these kids are being treated. Click Here to VIEW "Changing the Label" Video on YouTube (Advocating for Trisomy 13, 18, and other related Trisomies)
In March 2011 (Trisomy Awareness Month) three local Southern California Families met at Miller Children's Hospital in Long Beach, California. Sharing with the Supportive / Palliative Care team some of the local survivors LIVING with Full Trisomy 13 - Patau Syndrome. They have started a yearly Palliative Care Pursuit Walk to Support the Pediatric Palliative Care Program at Millers Children's Hospital Long Beach.
Local Hospitals that help care for our Trisomy kids. :)
Miller Children's Hospital (Long Beach and Surrounding areas.)
(Newport Beach, Irvine, and Orange County Surrounding areas)
Children's Hospital of Los Angeles
Los Angeles Orthopedic Hospital
Before sharing this PDF link below, I want to state, Memorial Care Center for Women and Long Beach Memorial Medical Center in 2000 was wonderful when Natalia was born. Natalia was appropriately wisked off to NICU and she was cared for as you would any typical child. That I am grateful for. I'm thankful we did not deal with the Prenatal pressure that some receive when having a Prenatal diagnosis of Trisomy 13.Children's Hospital of Los Angeles
Los Angeles Orthopedic Hospital
As some of you know, I've spent years online helping families share their trisomy 13 stories. While I'm not presently facilitating the LWT13 site, I am still passionate about making sure there is not MISinformation being promoted. Thousands of women have shared on the many Trisomy Advocacy Resources, to help others with this unique life journey. So I was very surprised to come across this link last week.
In 2010 there was conference sponsored by Memorial Care Center for Women that states in their literature that "Trisomy 13 is fatal" This unilateral statement is Outdated and MIS-information. There are over 100 Survivors LIVING with Trisomy 13 at this posting, and many who had lived several years before their death. See SOFT USA and the Archive LivingwithTrisomy13site and current trisomy 13 support for more information.
This is what caught my eye.
Click for pdf.
Current Topics in Obstetrics
Sponsored by Memorial Care Center for Women and Long Beach Memorial Medical Center in conjuction with Memorial UCI Center for Health Education
Course Description
It was found that 1 .) Trisomy 13 is a fatal chromosomal
http://www.memorialcare.org/pdf/rkf-aspen-2010-brochure.pdfI have been in touch with the Long Beach NICU and even emailed by local UCI Faculty and often have shared within hospital resources that there is local support. They know there are local trisomy survivors. :) From 2005 through present there has been an explosion of online Trisomy Support for families and Professionals for All Trisomy Variations including Trisomy 13 and Trisomy 18. Even the current .Gov Guidelines have been changed in 2007, to treat these kids on a base - by - base basis.
(At time of this initial posting) Treatment was: Medline Plus - Trisomy 13 Patau Syndrome Treatment of children with Trisomy 13 is planned on a case by case basis. The type of treatment given depends on the patients individual condition.
TREATMENT - Update date 8/4/2011
Medline Plus - Trisomy 13 - Patau Syndrome updated treatment
Treatment varies from child to child and depends on the specific symptoms.
Any Google search will offer you many Resources for Trisomy 13, Trisomy 18 Support and share that this is no longer a correct statement. Images Videos, the many Facebook Resources
SOFT USA is the Global HUB for Trisomy Support
*SOFT has yearly family Conventions Photo Gallery
CURRENT . GOV GUIDELINES for Treatment
*National Institutes of Health - Office of Rare Diseases Research - Trisomy 13
What is the life expectancy? Each child charts his or her own course. When given appropriate medical care treating the individual and specific medical issues, some of these babies can do well. Treat the individual medical symptom not the syndrome. Working with families, helping them connect to others who've traveled this unique journey can give both Professionals and Families the Support needed for this Life Journey.
More Reading to Help Families and Professionals on this Journey.
When lethal language is used often lethal decisions are made
b y T R A C Y K . K O O G L E R , B E N J A M I N S . W I L F O N D , A N D
L A I N I E F R I E D M A N R O S S
Although many of the congenital syndromes that used to be lethal no longer are, they are still
routinely referred to as “lethal anomalies.” But the label is not only inaccurate, it is also dangerous: by
portraying as a medical determination what is in fact a judgment about the child’s quality of life, it wrests
from the parents a decision that only the parents can make...
Who would want a child like that? (click here)
I am told one doctor said to another about a woman wanting to bear and deliver a child with known severe disabilities: "But who would want a child like that anyway?".....
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