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

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."

Shorewood family keeps telethon tradition alive after losing son - Joliet Herald News

Shorewood family keeps telethon tradition alive after losing son - Joliet Herald News

Jonathan Cook of Shorewood changed the way his family saw the world during his 10 years of life.

He was born with trisomy 13, a genetic disorder also known as Patau syndrome.

Most babies with the disorder don’t survive more than a few days. One in 20 babies will live longer than six months.

Jonathan was destined to stay among the living for a longer time.

His parents, Ray and Cindy Cook, were told something was wrong after an ultrasound when Cindy was three months pregnant. Amniocentesis confirmed Jonathan had trisomy 13.

“At the time, we were encouraged to terminate the pregnancy because we were told it was incompatible with life,” Cindy said. “His quality of life would be so poor. You know, just a very grim picture was painted of what his future would be like — if he was born alive.

“That just really wasn’t an option for us,” she said. “We decided we would really just put it in God’s hands.”

Pursuing a normal life

Jonathan was a full-term baby, weighing 8 pounds at birth. He had fewer complications than other trisomy babies, Cindy said.

He needed oxygen and was fed through a tube in his stomach. But he came home from the hospital after only a week’s stay....To Read Full Article.

Photo info: Cindy Cook (below left) and her husband Ray (below right) hold a photo of their son Jonathan, who died at age 10 from Trisomy 13, as their sons (from left to right) Evan, 8, Nathan, 6, and Jacob, 8, stand nearby Monday, April 16, 2012, in Shorewood. The Cook family puts together a team for the Joliet Easter Seals telethon in memory of Jonathan. | Matthew Grotto~Sun-Times Media

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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