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

Living With Trisomy 13 has its first Trisomy 18 Story!!!

Thank you to Alisha and Alex Hauber the founders of TAG for sharing their son Lane's story with us. If you have your own Trisomy 18 or other rare diagnoses story to share please visit our share your story page  http://www.livingwithtri13.org/shareyourstory.html

"Lane is now 3 1/2 years old and he's fighting the good fight! We are so proud of our little boy and he has taught us how to be better parents and advocates!"

http://www.livingwithtri13.org/albumlane.html

For the boy who was never supposed to live, a birthday bash

For the boy who was never supposed to live, a birthday bash

From the article, read the full article here http://www.ksl.com/?sid=20875687&nid=1010

SALT LAKE CITY — Aaron Peterson was never supposed to make it this far.

He is "not compatible with life," according to some doctors. Born with Trisomy 18, a genetic disorder that comes with a host of life-threatening medical conditions, Aaron has been defying the odds for two years.

To celebrate Aaron's success, Rebekah threw him a birthday party on Wednesday. Last year, his birthday party drew hundreds. This year, too, saw a crowd.

Mom speads the word about her daughter and trisomy

An amazing mom has come up with an AMAZING  way to spread awareness for Trisomy 13 &  18. In honor of her daughter Giuliana's 2nd Birthday Jill DelSignore had with the help of a major advertising agency 3 billboards displayed.

Check out her blog here  http://g-giftoflife.blogspot.ca/

Mental health hero: Overcoming loss, dealing with depression

Read more here

http://www.mlive.com/news/saginaw/index.ssf/2012/06/mental_health_hero.html

This is part one of a two part series about Steven Shapland, a physically and mentally disabled man who was honored by the Saginaw County Community Mental Health Authority last month.

BLUMFIELD TOWNSHIP, MI — Steven Shapland is a busy man.

Between working, building houses, volunteering and being a season ticket holder for the Saginaw Spirit, there isn't much free time in his life.

Each chromosome is responsible for hundreds of genes, which account for countless traits and characteristics. Although scientists have not been able to pinpoint the function of every chromosome, Shapland's mother said his trisomy 8 syndrome has manifested in number of ways.

Shapland's right arm, which is a few inches shorter than his left, contains extra bone and does not have full range of motion. He also has difficulty with the dexterity in his fingers and has extra cartilage in his ankles, among other things, Dinnan said.

"He's got a twofold thing, which makes him pretty rare," she said. "From the time he was young, the geneticist, the urologist, they all said they didn't have much to compare him to in the medical journals because he had two problems going on. And their prognosis was always, 'Wait and see, wait and see, wait and see.'"

New changes in LWT13

We are expanding!!

Living With Trisomy 13 is now AN OUTREACH FOR TRISOMY AND OTHER RARE DIAGNOSES.

We are expanding to encompass a larger group of families. There are many families out there with a diagnosis similar to Trisomy 13. These families to have now where to turn and need hope, courage and inspiration. Come visit our site www.livingwithtri13.org and see our albums. If you are a parent or family member facing a difficult rare diagnosis, have an encouraging story of hope, or a treasure memory story to share please contact me Vanessa@livingwithtri13.org.

I would also like to give a very warm welcome to our newest board member Robin Martin. Robin will be joining our organization as the Director of Administrative Services. 

Take care and God bless

Vanessa Hernandez

Executive Director

Living With Trisomy 13

An outreach for trisomy and other rare diagnoses

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)

Grieving mother plans fundraiser

Click below to read the full article 

http://www.mk-news.co.uk/News/Grieving-mother-plans-fundraiser-16052012.htm

An inspirational young mother has the biggest bands in Milton Keynes rallying around her to raise funds for the specialist nurses who enabled her to take her ‘angel’ home to die.

Baby Emily Elizabeth was given just four days to live after she was born with a genetic syndrome, Trisomy 18, that went undetected during pregnancy.

But despite the odds tiny Emily, who weighed just 4lb 5oz when she was born, lived for 26 precious days.

She said: “Edwards, or Trisomy 18, is the second most common syndrome after Down’s Syndrome but if you ask people if they’ve ever heard of it they say ‘no’. If you ask if they’ve heard of Down’s Syndrome they say ‘yes’."

“I thought I was walking alone but setting up Emily’s Star has put me in contact with other people who have gone through the same as I have."

“Emily’s Star has helped Emily to live on but it’s also helped me a

lot.”

Bella Santorum turns 4!!!

Thank you all so much for the birthday wishes yesterday! 

Our family has another birthday to celebrate in just a few days, when our youngest daughter Bella turns 4 on Sunday, May 13. We’d like to make Bella's birthday as special as possible, so we are asking you all to send her a birthday wish on our website. Please take a moment to send her a wish using the link below, and please LIKE and SHARE this post so your friends and family can send their birthday wishes, too!


http://www.ricksantorum.com/

Be sure to check out Living With Trisomy 13 on Instagram

This was a shout out from a follower on Instagram. I thought the response was great!! Thanks to you all! I'm still working on getting more pics up!

 

                                                                

Asheville. NC :: Special Reports - Living With Trisomy 18

News ABC 13 Shares another amazing story of Living with Trisomy

Asheville. NC :: Special Reports - Living With Trisomy 18

On  You tube http://youtu.be/M5JDrQrwYFY

Local Teen With Trisomy 18 Continues To Make Strides

http://www.wusa9.com/news/article/203910/28/Local-Teen-With-Trisomy-18-Continues-To-Make-Strides

ELDERSBURG, Md. (WUSA) -- Steve and Maryanne Danko of Carroll county take joy in describing the personality of their son, Mikey. They say his carefree smile and laughter are his most common expressions.

Steve Danko says, "It's so amazing how much happiness he brings to the people who get to know him."

Mikey is 14 years old, he is one of the longest survivors of trisomy 18. Trisomy 18 was brought into the national spotlight after Senator Rick Santorum announced he was dropping out of the Republican presidential nomination race. Santorum's daughter, Bella, was suffering due to complications from Trisomy 18.

Maryanne Danko says, "I remember early on when the doctors would say you've got an appointment six months from now and I thought 'well, we'll see.' You know, it was hard to kind of think six months from now because we were given such a bleak outlook."

TAG (Trisomy Advocacy Group) Stroll for HOPE - 2012 SOFT Conference

The Trisomy Advocacy Group Board Members will be participating in the STROLL FOR HOPE at the 2012 S.O.F.T. Conference and would love for your financial support in honor of our team.


Please follow the link and PLEASE SHARE THIS LINK on your personal page to help spread the word, and raise money for the S.O.F.T. organization.


SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18,13 and related chromosomal disorders.

Poland Girl Has Same Disorder as Santorum's Daughter

www.wytv.com

"There is hope. You have options right now and you know, that's something that we need to break away from, those pre-existing stereotypes and realize you know, we can do this. There are choices. You can make choices," DelSignore said.

Besides choices, there is also support.

"You're not alone. Whether you're in any phase of this diagnosis, you're in prenatal, you have a living child right now, you have an angel child or you have an old adult child, there is support, there are others out here," DelSignore said.


Be Sure to check out the other story they did on Giuliana too

Community Pulls Through for Baby Who Defied the Odds

A community has come together to raise a staggering amount of money on short notice to help a local family whose youngest daughter continues to defy the odds.

"You take your child, and you give them the best life possible, and you do anything that you can to make that happen," said Jill DelSignore, of her daughter, Giuliana DelSignore.

Giuliana was born in August 2010 with a genetic disorder known as Trisomy 18, or Edward's Syndrome.

Lessons Learned from Two Stories of Babies Diagnosed in Utero with Serious Genetic Syndromes

Last January Archbishop Charles Chaput delivered the Keynote Address to the 13th annual Cardinal O’Connor Conference on Life, which was held on January 22 at Georgetown University in Washington, DC. He was talking about children with special needs, most of whom would live much, much longer than Ella Rose and Sophia. But the wisdom of Archbishop Chaput’s  moving remarks made just prior to the March for Life rings equally true in this situation as well:

“These children with disabilities are not a burden; they’re a priceless gift to all of us. They’re a doorway to the real meaning of our humanity. Whatever suffering we endure to welcome, protect and ennoble these special children is worth it because they’re a pathway to real hope and real joy. Abortion kills a child; it wounds a precious part of a woman’s own dignity and identity; and it steals hope. That’s why it’s wrong. That’s why it needs to end. That’s why we march.”


*****************************************************************

Keeping our Trisomy Families in prayer off the NEW and Updated LWT13 Prayer BLOG

1. Trisomy in the NEWS - Bella Santorum's Fight
2. Trisomy 18 is a genetic anomaly occurring when a child has three chromosomes, rather than two, in the 23 pairs of human chromosomes
3. Rick Santorum may have abandoned his bid for the Republican presidential nomination, but families impacted by the rare genetic disorder that afflicts his 3-year-old daughter say he won’t be easily forgotten.
   
4. “During the pregnancy and early on, my local contacts and my online community - that got me through things,” Budd said. “Now, I’m at the point where Rebekah is fairly healthy and stable, and so I spend a lot of time helping other families that are just beginning this journey, or who have never known that there is a big community to help them.”
   "Kellett, the parent of a child with trisomy 18 who died earlier, said Santorum’s presence in the race was good for families like hers and the ones she advocates for. She’s met the Santorum family more than once, and said she connects them with families she works with.
   “The Santorums should be congratulated for the sacrifice they made,” Kellett said. “I know it wasn’t easy having their daughter and all the demands of running a presidential campaign. They, I think, should just be commended for that. Boy, in my eyes, they really are American heroes.”
   
   
   Mary Kellett founded the Minnesota-based group Prenatal Partners for Life which focuses on connecting families and children with trisomy related disorders with resources, Kellett said. "She estimates the group has provided assistance to children in all 50 states and 27 countries."
   
   
   Susan Budd works with the New Trisomy Advocacy Group TAG VIDEOS

Inpatient Hospital Care of Children With Trisomy 13 and Trisomy 18 in the United States

Inpatient Hospital Care of Children With Trisomy 13 and Trisomy 18 in the United States

*** Concluding statement of 12-year American major national study of interventions on children with trisomy 13 and 18:

"Because we are currently unable to identify which children might be long-term survivors, universal application of the term lethal to the diagnosis of trisomy 13 and 18 is not appropriate."

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."

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!