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

Great new study shows how parents of children with Trisomy embrace and love their children!!!

Parents of Severely Disabled Kids Say They Enrich Their Lives

July 23, 2012
 http://news.health.com/2012/07/23/parents-of-severely-disabled-kids-say-they-enrich-their-lives/

From the article:

Hernandez’s pediatrician wept as she told her the diagnosis. The baby had trisomy 13, a devastating chromosomal abnormality. Most children die before their first birthday and have serious mental and physical disabilities, including heart and breathing problems.

“I don’t want to tell anybody any pipe dream. It’s not all sugarplum fairies. The first year my other children basically didn’t have parents. My house didn’t get cleaned and the laundry didn’t get done. It was all about Isabel,” she said. “But we want people to know the real story. To give them both sides, and let them make a decision. Don’t try to scare them into something.”

“My life is better because of Isabel. All of our lives are better because of her.”

Happy 6th Birthday Arianna!!!!

Happy 6th Birthday to a very special girl with Trisomy 13!!!

Arianna Jolie Snell

Born: June 19, 2006

West Jordan, Utah (UT) 

 

 "I update our family blog often to keep our friends and family in the loop, please stop and visit sometime. AriannaJolieSnell.blogspot.com"

See Arianna's Full album here
http://www.livingwithtri13.org/album65.htm

THE VOICE OF A RARE CHILD

Please take a moment and read this article we just had published in YOUR PREGNANCY a magazine in South Africa.

http://www.yourparenting.co.za/child/special-needs/living-with-trisomy-13 

A very special thank to YOUR PARENTING for publishing this article and helping us to spread awareness!

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/

Why are anti-abortion legislators cutting essential funds for special-needs children?

Why are anti-abortion legislators cutting essential funds for special-needs children? 

Read More The Pro-Life Parad

On April 12, Governor Jan Brewer signed a bill making Arizona the eighth state in the union to ban abortions beyond 20 weeks. Like most other laws of its kind, House Bill 2036 had been camouflaged as a measure against suffering, predicated on the notion that a fetus at 20 weeks can feel pain. Every woman who’s ever been pregnant, however, knows what the law really means: Twenty weeks marks a crucial point in a pregnancy, when fetal abnormalities can be detected, often for the first time. Many women confronted with a grim prenatal diagnosis choose to have an abortion. Now, in Arizona, they can’t.
It would be logical to expect, then, that these new restrictions on abortion would be accompanied by increased public services for women and children—especially for children with developmental disabilities. The laws should also lead to stronger support for physically, intellectually, and developmentally disabled teenagers and adults—which is, after all, what the healthier and luckier of these babies grow up to be. You might expect the people passing these laws to rally behind the Patient Protection and Affordable Care Act, which bars insurance companies from turning anyone away based on a pre-existing condition; after all, no condition is more pre-existing than one you’re born with. 

Brave Blacon parents of a miracle baby need your help to raise money for a lifesaving hospital

May 24 2012 by Rachel Flint, Chester Chronicle

GIGGLING, smiling and laughing, it’s hard to imagine that toddler Dylan Edge is anything but a healthy happy child.

But without constant care and medical treatment, Dylan – who has suffered from Patau’s syndrome since he was born and regularly lapses into fits and seizures - would have died when he was born.

Now, almost three years after Dylan’s parents Claire and Stuart faced losing their newborn baby, the couple are hoping to raise thousands of pounds for Alder Hey Children’s Hospital which they say helps keep their family alive every day.

“We really want to do this walk, we have done a lot of fundraising events but this is our biggest challenge yet,” said Claire, who last walked the Sandstone Trial when she was a teenager and will now be walking it with 23 doctors, nurses and friends and family.

Read More here
Brave Blacon parents of a miracle baby need your help to raise money for a lifesaving hospital

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)

HuffPo writer aborts daughter with Trisomy 13 | Jill Stanek

That night I tried reading about the procedures, but I kept feeling nauseous. Sophia was now moving regularly, and we were planning a 21-week D&E or induced birth.
HuffPo writer aborts daughter with Trisomy 13 | Jill Stanek

* Wow, normally I would not post ANY article that has to do with abortion. I just wanted everyone to see that this was aborted at 21 WEEKS. An induced BIRTH!! How could you name your child then allow it to be ripped from your womb??

~ Vanessa

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!

 

                                                                

Living with Trisomy 13 article in Special Needs.com

http://www.specialneeds.com/children-and-parents/general-special-needs/living-trisomy-13




Raising a special needs child is by far not an easy task.  Your daily life changes in ways that no parent can ever imagine possible.  Now add into that the fact that your child has a genetic syndrome that doctors and medical professionals term “incompatible with life."  Trisomy 13 is one of the syndromes, which was thought at one point to be fatal in all cases.  Well it’s not, our site is filled with over 100 albums of living survivors some who are in their teens and older.  Our mission is to erase the stigma that is attached to these children and show their lives through their own stories.

Abortion Backers: Give Women iPods to Drown Out Ultrasound

Abortion Backers: Give Women iPods to Drown Out Ultrasound

http://www.lifenews.com/2012/05/03/abortion-backers-give-women-ipods-to-drown-out-ultrasound/

A Texas woman’s novel way of dodging abortion regulations may be music to the ears of pro-choice advocates, but it highlights the abortion movement’s selective desire to conceal truth.

In many states, pro-life groups have successfully enacted laws requiring women to receive an ultrasound before an abortion procedure. Texas law goes one step farther, requiring women seeking abortion to hear their children’s heartbeats and a medical explanation of the sonogram. Denise Paolucci, 35, has decided to combat the new law by providing iPods to women seeking abortion – enabling them to tune out the required information.

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."

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.”


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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."

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.