Ethics - Prenatal and Living Trisomy Experiences have a voice - New Study

Healthcare NEWS Genetic Medical Ethics - Bioethics Prenatal Testing Screening Trisomy 13, 18

“Our children are not a diagnosis”: the family experience of trisomy 13 and 18 

By Keith Barrington - neonatologist and clinical researcher

Posted on 23 July 2012 

Annie Janvier, Barb Farlow and Ben Wilfond have just published a rather disturbing study. At least I feel a bit disturbed. (Janvier A, Farlow B, Wilfond BS: The experience of families with children with trisomy 13 and 18 in social networks. Pediatrics 2012.) It is one of those studies that challenges many assumptions. They set up an internet questionnaire and contacted parents of infants with trisomy 18 and trisomy 13 who belonged to various internet-based support groups...

...So here are some guidelines to use when talking with parents who have received a diagnosis, prenatal or postnatal, guidelines that you could develop as a result of these families’ reports of their experiences:  READ MORE...

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

Global News Trending...The children survivors of Trisomy 18 and 13 are increasing

Global News Trending

The children survivors of Trisomy 18 and 13 are increasing 
http://www.gtdaily.com/the-children-survivors-of-trisomy-18-and-13-are-increasing

Children with Trisomy 18 managed to survive to older ages. This study result will be a great news for parents of children with Trisomy 18 and 13 because more children are surviving for this disease. Details!!!!!Trisomy 18 and 13: More children are survivingStudy shows children with disorder are surviving to older ages.
Trisomy 18 is a rare genetic disorder that is considered fatal, but according a new study, there may be hope for the children affected.
Dr. Shawn McCandless, Director of the Center for Human Genetics at University Hospitals Case Medical Center in Cleveland said that the treatment and care of the children with Trisomy 18 and 13 may impact their ability to survive. “We don’t know how well these kids can do until we give them every opportunity to do their very best,” he said. (Danielle Adams – collegenews.com)

WOW!!! Trisomy is getting LOTS of Attention.....We will soon be a household name!!!

Abstract from an article on http://www.todaysthv.com/default.aspx


http://www.todaysthv.com/news/article/206688/288/Trisomy-18-gaining-national-attention

Trisomy 18 gaining national attention...

WASHINGTON (CBS) -- Former GOP presidential candidate Rick Santorum drew attention to Trisomy 18 during his campaign. His 3 year old daughter has the rare genetic disorder.
Little Livia Harget plays with her mom who treasures every smile, every moment. Livia just celebrated her first birthday, but doctors didn't think she would come this far. Her mother Bethany says, "They said even if she makes it to birth don't expect her to make it through birth."

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 Awareness ~ Trisomy Celebration in Orlando

Pictures: Trisomy support group meets in Orlando ~ Trisomy Celebration 2012

Families support each other facing rare genetic disorder

Caleb had Trisomy 18 and would have been 3-years-old on March 20. The term trisomy is used when there is an additional, or third, chromosome instead of two. For example, Trisomy 18 is the addition of a third, number 18 chromosome, and Trisomy 9 ...

Joyful Funerals

“But the difference between the Christian and the non-Christian is the hope we have in Jesus Christ. We want to show the world that we grieve, but that our grief is filled with hope in Christ.”

Read more: Anniston Star - Joyful sorrow Funerals are no longer somber affairs

Wow just a another amazing article of how people are now celebrating life instead of mourning death. If you read to the end of the article they tell the story of a baby with Trisomy 13 that lived for nine hours.

This is what "Embracing Life" is all about.

Article from th Black Foot Journal

Check out this article that was published in the Blackfoot Journal. Another great Mom INSPIRED BY ANGEL.

Rewarded for dedication

Mom’s therapy for special needs child turned into a full career

BY TAMMY SCARDINO
tscardino@journalnet.com

BLACKFOOT — Patricia Farmer, a School District No. 55 administrator, entered the field of special education years ago after her son was diagnosed with trisomy 13 — a genetic disorder in which babies have three copies of genetic material instead of the usual two.