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.”

Catholic journalist dies after delaying cancer treatments for unborn baby | LifeSiteNews.com

Catholic journalist dies after delaying cancer treatments for unborn baby | LifeSiteNews.com

An amazing story of a mother's love. She sacrificed her own life to save her unborn child.

From the article :

Bolstered by her Catholic faith Barbara, who worked as a journalist in the communications office of the Catholic diocese of Cordoba, made the difficult decision to forgo all treatments except for a surgical procedure that left her in immense pain.

But Ignacio says that throughout the ordeal, Barbara remained strong. “My wife said from the beginning that our daughter would be born the day that God wanted, not one before,” he says.

Heavenly Birthdays Calendar!!

Heavenly Birthdays Calendar

We at LWT13 have added a new calendar page to our site. Every month we will update the calendar with birthdays for the month of children who have gained their wings.

We may not be able to physically celebrate their birthdays with them, but the mere act of remembrance means so much to their parents.

As we honor these children on their days we ask that you do something also, say a prayer for the family, light a candle , or simply just remember the parents who can no longer hold their children.

Thank you and God Bless you all!!!

 Love and Hugs 

Vanessa

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

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!

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.

My son is not a genetic 'fault' -- the downside of prenatal genetic testing - Fox News

This is the reality of prenatal testing. While some may argue that it gives parents more time to prepare medical interventions and to prepare for caring for a disabled child, many will tell you that it only allows medical professionals more time to convince parents that abortion is the more caring option. Please be sure to read the full article below.

My son is not a genetic 'fault' -- the downside of prenatal genetic testing

Read more: http://www.foxnews.com/opinion/2012/06/08/my-son-is-not-genetic-fault-downside-prenatal-genetic-testing/#ixzz1xIv5lGhp

From the article:

"Look no farther than the statistics -- 90% of unborn children who test positive for Down syndrome or cystic fibrosis are aborted."
"With this new genetic test giving parents and society the ability to map the genetic code of their unborn baby, it is no doubt that abortions will rise. Scared mothers and fathers will be told that aborting their baby is the compassionate choice and that you can always try again if you didn't want a girl with red hair, freckles, and a higher than normal chance of developing breast cancer."

Reflections of Life

As I sit as my desk in my home office working on transferring all the site albums over I have an inspiring moment I thought I would share. I am looking at all this amazing and miraculous children and I started to cry. I to this day am amazed at how each and everyone of them has the same facial expressions. I see Isabel in all of them. Today , I was reading a story and all I could do is think to myself that I can't wait to see Isabel at that age. Looking at this little boy with ailments similar to my daughter I have hope.

I now reflect on a time in life when hope was not there. A time when I couldn't buy Isabel clothes a size bigger than what she was wearing at the time. I would think to myself what if she never gets to wear them and they just hang in the closet taunting me. When I used to say to my husband I HOPE Isabel lives to see that age, now it's I CAN'T WAIT until Isabel is that age. The families thank me all the time for what I am doing, but now I must THANK YOU all!!! Thank you for being my inspiration, my strength, and my hope. While I may not have given birth to all your children, they are still like my very own. Most importantly, THANK YOU FOR MAKING ME A BETTER MOTHER. As we embark on this journey to growth , I felt the need to stop and reflect on the past. Here is to new beginnings and new dreams. May your dreams carry you faster than your mind can plan!!!

Hugs and Blessing

Vanessa

If nothing ever changed, there'd be no butterflies. ~Author Unknown

I saw this quote this morning and it must have been meant for me. Living With Trisomy 13 is making huge changes. As we grow into our role in the community as a Non-Profit organization we are still trying to find our  place. The small web based community we once were,we are no longer. LWT13 is now that caterpillar changing in to the butterfly. This journey is long and tedious but all for the greater good. As we look at life beyond the immediate we see a new horizon. We are going to change the way families are treated when dealing with these rare diagnoses and we are going to be their support system. I hope everyone will join us on this new journey as we evolve into a greater organization. I think Albert Einstein said it best “Life is like riding a bicycle. To keep your balance, you must keep moving.”  So, we will keep moving and I hope you move with us.


Hugs and Blessings
Vanessa

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.'"

Finding The Words To Talk About Disability

Read More Here
http://www.huffingtonpost.com/amy-julia-becker/finding-the-words-to-talk_b_1449819.html

William came home from school a few weeks back and he said, "Mom." He said it as a sentence, the way he does when he has something important to tell me. And then again, "Mom. My friend Ashley is not good at listening. And she screams."

William is three. He attends a local public preschool, and he's in an "integrated" classroom, which is to say, a classroom where typically developing children learn and play alongside children with special needs. Three years ago, William's older sister Penny was in the same classroom, but she entered it with an "I.E.P.," an Individualized Education Plan. Penny has Trisomy 21, also known as Down syndrome, and that third chromosome impacts nearly every aspect of her development. She wears braces to support her flat feet and weak ankles. When she was in preschool, she relied on sign language in addition to spoken words to communicate. She received Occupational Therapy, Speech Therapy, and Physical Therapy as a part of her classroom experience.

Stormy Rich, Florida High School Student, Barred From School Bus After Reporting Bullying Of Special Needs Student

Read More Below

http://www.huffingtonpost.com/2012/05/28/stormy-rich-florida-high-_n_1551350.html

Stormy Rich, an 18-year-old Florida student, says she was punished after reporting bullying of a special needs student on a school bus, and standing up to those bullies when the school didn't take action.

Rich, an Umatilla High School student, was riding on a middle school bus because she had earned enough credits to avoid a first-period class, getting to school later by taking the bus for the neighboring middle school, the Daily Commercial reports.

But one girl on the bus -- a special needs student -- was regularly being picked on by her peers, but couldn't comprehend what was being done to her.

"Just because she doesn't understand doesn't mean that should be happening to her," Rich told WOFL-TV.

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

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)

Mother's fury after Facebook BANS her for posting pictures of her baby son who lived for just eight hours after being born with rare birth defect

Mother's fury after Facebook BANS her for posting pictures of her baby son who lived for just eight hours after being born with rare birth defect

Read more: http://www.dailymail.co.uk/news/article-2146588/Mothers-fury-Facebook-removes-pictures-baby-son-lived-just-hours-born-rare-birth-defect.html#ixzz1vK9c01kH

'They of course gave us the option to terminate,' said Heather. But they chose to carry their baby full term and turned to God for strength.

'My husband and I, we started prayer and we knew that God knew since the beginning of time that he had us for this,' she said.

According to Facebook's community standards page, there are nine types of content that may be deemed offensive and removed: Violence and Threats, Self-Harm, Bullying and Harassment, Hate Speech, Graphic Violence, Nudity and Pornography, Identity and Privacy, Intellectual Property and Phishing and Spam

Heather said she has no idea which category her child's picture falls under but has now launched a protest  - posting the picture several times and getting her friends and family to contact Facebook

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.”

Join us on Twitter https://twitter.com/#!/LivingWithTri13

Join us on Twitter https://twitter.com/#!/LivingWithTri13

Join us on Pinterest

News Blog Entries http://www.livingwithtri13.org/trisomy-13-news.htm
Join us on Pinterest http://pinterest.com/trisomy13/

Obama to Cut Medical Benefits for Active, Retired Military, Not Union Workers

Obama to Cut Medical Benefits for Active, Retired Military, Not Union Workers

 “The proposed increases in health care payments by service members, which must be approved by Congress, are part of the Pentagon’s $487 billion cut in spending. It seeks to save $1.8 billion from the Tricare medical system in the fiscal 2013 budget, and $12.9 billion by 2017.”

This is a plan that is sure to enrage Congressional Republicans and cause a big fight on Capital Hill.

Read more at http://www.inquisitr.com/200985/obama-to-cut-medical-benefits-for-active-retired-military-not-union-workers/#z5tihPdgRH5X4kpK.99

Miracle League gives kids with special needs a turn at bat

Published: Tuesday, May 15, 2012, 9:29 AM     Updated: Tuesday, May 15, 2012, 9:29 AM

http://www.nola.com/family/index.ssf/2012/05/miracle_league_gives_kids_with.html

The Miracle League of Greater New Orleans gives kids with disabilities a chance to play baseball, to put on uniforms and to run — or be pushed — around the bases rather than just sitting on the sidelines and watching. It gives them a chance to be part of a team and of an organized league. It gives them a chance to enjoy a favorite American game.

Miracle LeagueTyrese Primus goes up to bat with a little help from his buddy, Michael Kennedy.

“The main thing is, they have fun,” says Gina Lorio, executive director of the nonprofit group.

NEW Printable Trisomy 13 - Patau Syndrome Brochure (pdf) for Families and Professionals

NEW Printable Trisomy 13 - Patau Syndrome Brochure (pdf) for Families and Professionalshttp://www.livingwithtri13.org/Trisomy-13-Lwt13-New-Brochure.htm

NEW Media Page, Press Releases, Articles and Upcoming Eventshttp://www.livingwithtri13.org/trisomy-13-mediakit.htm


Trisomy 13 - Living With Trisomy 13 Media Page and Media Kit. Includes a downloadable PDF media kit and articles featuring Living With Trisomy 13.

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

Join us on Facebook https://www.facebook.com/groups/Trisomy13/

Join us on Facebook https://www.facebook.com/groups/Trisomy13/

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/

A truly amazing video

Marine returning home greeted by 6-year-old son who learned to walk while his dad was gone (VIDEO)

By Dylan Stableford | The Sideshow – 23 hrs ago


http://news.yahoo.com/blogs/sideshow/marine-returning-home-greeted-6-old-son-learned-130055137.html

In a heartwarming video that will soon be flooding email inboxes, Facebook walls and Twitter feeds, a U.S. marine returning home from Afghanistan is greeted by his 6-year-old son at a ceremony inside a school gymnasium. The boy, who had cerebral palsy, was unable to walk when his father, Staff Sgt. Jeremy Cooney, was deployed.

Mother's Inspiring Video About her Blind Baby Boy

People ask her why she didn't choose to abort her boy. They stare at both of them. They talk behind their back. But none of that matters because this mother knows that her boy is beautiful just the way he is. What a great video.

http://www.godvine.com/Mother-s-Inspiring-Video-About-her-Blind-Baby-Boy-1484.html?fb_comment_id=fbc_10150994588764845_221718654_10151003443099845#f356863d7c

About Chromosomal Abnormalities

About Chromosomal Abnormalites

May 9, 2012 - 9:08am

By Elizabeth Stannard Gromisch

http://www.empowher.com/pregnancy/content/about-chromosomal-abnormalities

An example of a trisomy is Down syndrome, which is also called Trisomy 21, as the individual has three chromosomes in pair 21.

Symptoms of Down syndrome include small hands and feet, poor muscle tone, and a flat face. Several health conditions can occur with Down syndrome, including thyroid problems, hearing problems anddementia, according to the National Institute of Child Health and Human Development.

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.

"Incompatible With Life," A Death Sentence for Unborn Children | LifeNews.com

"Incompatible With Life," A Death Sentence for Unborn Children | LifeNews.com

The new group is calling for the introduction of legislation which would allow abortion where the unborn baby is diagnosed as being “incompatible with life”, meaning that she cannot survive outside the womb. She may die within the womb before the pregnancy term comes to an end, or alternatively, shortly after birth.


Every parent who finds themselves in this horrific situation, should at least be able to look back and accept that it was the condition that took their baby away from them, and no action that they initiated. The experience of Matt and Ginny Mooney, whose little boy Eliot was born with Trisomy 18 and lived for 99 days, inspired them to make the video 99 Balloons based on his life, and the love and care that they gave him during that time. Watching the short video of Eliot’s life is a teaching moment for all of us.

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

FIRST-PERSON: The dark side of prenatal testing

FIRST-PERSON: The dark side of prenatal testing

http://www.sbcbaptistpress.org/BPFirstPerson.asp?ID=37723

Ms. Monahan says prenatal testing is not "inherently evil." Sometimes these tests detect conditions for which doctors can then treat the baby in utero. But she told CNN, "the fact that it leads to so many abortions is absolutely troubling."

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."

Australian-first genetic test boosts chances of a healthy baby

VICTORIAN couples with a history of miscarriages, those at risk of passing on genetic disorders and older women struggling to get pregnant have had their chances of delivering healthy babies boosted through a new Australian-first genetic test.

http://www.heraldsun.com.au/news/more-news/australian-first-genetic-test-boosts-chances-of-a-healthy-baby/story-fn7x8me2-1226341606862

IDSC for Life: Down syndrome Abortion. Do We Talk About This or Not?

Click below to read the full article

IDSC for Life: Down syndrome Abortion. Do We Talk About This or Not?

We have been following a very interesting conversation via the internet.  It is between three people, all of whom we respect a great deal.

It began with an article, written by Monica Rafie and Tracy Winsor, in which they discuss the national Down syndrome organizations', NDSS and NDSC's, stance to remain neutral on the issue of abortion of babies who have Down syndrome. Monica and Tracy had suggested that the national organizations embrace "a simple and confident assertion that abortion is not an appropriate parental response to the prenatal diagnosis of Down syndrome."


Mark Leach responded to their article on Public Discourse.  The main point of his response was this, the NDSS and the NDSC "must assure the medical community that they are not pro life organizations."  He then goes on to state this, "Rafie and Winsor are quite right to call on NDSS and NDSC to take a public stand condemning selective abortion for Down syndrome. Doing so, however, is an anti-discrimination position, not an exclusively pro-life position. Rafie and Winsor’s larger argument, however, criticizing NDSS and NDSC for not being overtly pro-life or advocating the cause of the unborn ignores the actual difficult experience of expectant mothers." 


In fact, we hope you will read all of the articles. In this respectful dialogue, all three have brought to the table very good thoughts on this issue.  It is a conversation that needs to happen, as we are at a crossroads in this part of advocacy. The new test is looming. Insurance company's are partnering with the corporations that are making the test, while at the same time, the government has a mandate that is in place, ready to roll. We have no other choice, but to discuss this.

*Be sure to read the back articles within this respectful debate.