Dr Martin Mc Caffrey, Clinical Professor Neonatal-Perinatal Medicine, speaking on Perinatal Hospice

Published on Mar 31, 2016

DR. MARTIN MCCAFFREY, USA Clinical Professor in Neonatal-Perinatal Medicine at UNC Chapel Hill & Director PQCNC speaking at the Perinatal Conference on 30 January 2016 in Dublin. 

A wonderful much needed presentation on the current issues which face newly diagnosed trisomy 13 and 18 families. Professionals who care for these children would benefit by taking the time to view this well put together presentation. Please share with your social networks, friends and medical providers. https://www.youtube.com/watch?v=9_wmI0UQLEo

Welcoming 2014 Global - International Trisomy Support Groups for Families and Professionals

Welcoming 2014 Global Outreach
International Trisomy Alliance Support Group
http://www.internationaltrisomyalliance.com/trisomy-support-groups.html

National NEWS - Study reports Trisomy kids enrich their families lives

Parents and Many Pediatricians Disagree over treatment of babies born with Trisomy 13 or Trisomy18

By Dave Andrusko

Yesterday we ran a story by Alex Schadenberg which reinforced something we know to be true but is not widely understood: That most parents of children with Trisomy 13 or Trisomy18 conditions (in this case Canadian parents) consider their child to be happy and found that their lives were enriched by the child. He drew that conclusion based on the results of a study published in the current edition of the Journal “Pediatrics.”

I’m going to pick up here on the disquieting truth that these affirming observations are very different than that attitude of many pediatricians towards these conditions.  READ MORE

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

Medical Professional Literature, Articles and Resources

Neonatal Research Blog on the family experience of trisomy 13 and 18

TRISOMY 13 LIFE 

facebook group 

Click here

PRENATAL, PRE-BORN, LIVING and GRIEF Support.

Many families gathering together again from the

Original Living with Trisomy 13 .org Community.

Currently the livingwithtrisomy13.org  is rolling to SOFT at Trisomy.org for quick and immediate support literature.

TRISOMY LIFE trisomy 13 Patau syndrome trisomy 18 Edwards syndrome and images 

“Our children are not a diagnosis”: the family experience of trisomy 13 and 18

One of the most well-published academic neonatologists posted an article about our trisomy 13/18 children. He offers great advice to his colleagues. 
Click here for full Neonatal Research Blog article

Many wonderful comments too!!!
50 Plus at this posting!
Click here

33 Years Strong SOFT Organization for Trisomy 18, 13 and Related Disorders has been the ROCK of Trisomy Families with yearly conventions, medical literature, books and quarterly newsletters, be sure to view their publications off the website. 
trisomy.org 

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

Collage created by Barb Farlow International Patient Safety Advocate 
(Text within image)
OUR COMMUNITY HAS A VOICE
Janvier A, Farlow B, Wilfond B. The Experience of Families With Children With Trisomy 13 and 18 in Social Networks. 
Pediatrics  July 23 10.1542/peds.2012-0151
With heartfelt gratitude to Dr. Annie Janvier and Dr. Ben Wilfond 

Natalia - Full Trisomy 13 http://www.trisomyfavoritethings.blogspot.com

A new book ~ What Every Woman Needs to Know About Prenatal Testing

Amy Julia Becker Thin Places Faith, Family and Disability - opens the discussion regarding her new book, share your experience and or thoughts to help her cover all the unique situations women find themselves in... Thank you for your input.

My Next Book? What Every Woman Needs to Know About Prenatal Testing

Many of the comments already offered are interesting...

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org