Sunday, July 29, 2012

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

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...

Friday, July 27, 2012

Trisomy - Babies Born With Congenital Anomalies Enrich Families

Trisomy - Babies Born With Congenital Anomalies Enrich Families

Photo Noah's Never Ending Rainbow  (facebookThe 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
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

Tuesday, July 24, 2012

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

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.”

Friday, July 13, 2012

Catholic journalist dies after delaying cancer treatments for unborn baby |

Catholic journalist dies after delaying cancer treatments for unborn baby |

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.

Friday, July 6, 2012

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 


Wednesday, June 27, 2012

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

"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!"

Thursday, June 21, 2012

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."

See Arianna's Full album here