Trisomy - Babies Born With Congenital Anomalies Enrich Families

Trisomy - Babies Born With Congenital Anomalies Enrich Families

Photo Noah's Never Ending Rainbow  (facebook) The mission of Noah's Never Ending Rainbow, a national Trisomy organization, is to educate, advocate, raise public awareness, promote strategic alliances.



Trisomy 13, Trisomy 18 Babies Born With Congenital 

Anomalies Reportedly Enrich Families

HUFFPOST Living 

An ethicist who was not involved in the study says the findings point to a need to change the messages given to parents-to-be and new parents facing the reality of a baby with T13 or T18, as the conditions are called for short.

"This study should have us stop and think about what decisions, for which children, have been made on the basis of misinformation," says Francoise Baylis, a professor of bioethics and philosophy at Dalhousie University in Halifax.

"The negative narrative needs to change. Parents' experiential knowledge matters and should be available to expectant parents and new parents."

The study, by ethicists and the mother of a child born with Trisomy 13, is published in this week's issue of the journal Pediatrics.  READ MORE

Couple holding charity ball to raise funds for Rainbows

Chcek out this article 

http://www.thisisnottingham.co.uk/Couple-holding-charity-ball-raise-funds-Rainbows/story-15654501-detail/story.html

ABSTRACT BELOW

A COUPLE whose baby girl lived for just five days are holding a fund-raising ball in her memory.

Isabel and Rick Shouler are staging the event on May 4, which would have been the day after baby Imogen's first birthday.

Imogen was born with a rare chromosomal abnormality, Patau's syndrome, also known as Trisomy 13, which was identified at a routine 20-week scan. Until then all had been going well with Isabel's pregnancy.

Trisomy 18 and 13: More Children Like Bella Santorum Survive

By CARRIE GANN , ABC News Medical Unit
April 9, 2012

"Study author Dr. Chris Feudtner said the analysis, published today in the journal Pediatrics, shows that the conventional thinking that the disease is lethal is not totally accurate."

..."the study reflects a shift in philosophy on how to treat children who have such severe genetic disorders."

..."Thankfully, this has changed in recent years. Not only do some of these children survive, they survive with a pretty good quality of life," Marion said."

..."A similar trend happened in the 1960s and '70s for children with Down syndrome, who were once thought to be disabled beyond hope."

..."We don't know how well these kids can do until we give them every opportunity to do their very best," McCandless said."

PEDIATRICS - OFFICIAL JOURNAL OF THE AMERICAN ACADEMY OF PEDIATRICS

Abstract of publication: http://pediatrics.aappublications.org/content/early/2012/04/04/peds.2011-2139.abstract

2012 Annual SOFT International Conference!

Support Organization for Trisomy 18, 13 and Related Disorder

SOFT 2012 Conference – Another Championship Cause

26th Annual International Conference

St. Louis, MissouriJuly 18 – 22, 2012

Meet other families in beautiful
St. Louis, Missouri for the 26thAnnual SOFT International Conference!