Our LivingwithTrisomy13.org Community wishes everyone
A Very Merry Christmas 2016 ~ Trisomy 13 LIFE
You can view the collage images in larger view on this thread within
thefacebook group.
A MUST watch! Neonatologist Dr. Martin McCaffrey, medical adviser to the International Trisomy 13/18 Alliance, speaks about his personal journey caring for newborns with T13/18 and how the evidence supports that doctors MUST change the way they care for these children. Please share with your networks, friends and medical providers.
Be sure to VIEW the Trisomy 13 LIFE facebook groups collage's sharing
Trisomy 13 Life Expectancy Trisomy 13 LIFE Blogspot
The Living with Trisomy 13 Community shares family experiences
and families offer support to each other since 2005 www.livingwithtrisomy13.org
Families and Professionals are encouraged to register with SOFT www.trisomy.org
The Trisomy 13 Life - Living with Trisomy 13 Community wishes a s Happy Father's Day to our Father's having children diagnosed with Trisomy 13 ~ Patau Syndrome. Those caring for living children now and those with treasured memories. Please feel free to add your Father and me photo in the comments if you missed submitting one. To view the photos in LARGER View see the message thread.
Happy Mother's Day to our many Trisomy 13 Mother's Those caring for living children now and those with Treasure Memories. Please feel free to add your Mother and me photo in the comments if you missed submitting one.
A special Thank You to Shannon, Delainey's Mother for helping us put these collages together. Look forward to another in June for Father's Day.
Tsukada, et al 2015 Better Prognosis in Newborns with Trisomy 13 Who Received Intensive Treatments: A Retrospective Study of 16 Patients . Cell Biochem Biophys. 2012 Jul; 63(3): 191–198. Published online 2012 Apr 10. doi: 10.1007/s12013-012-9355-0
The patients who received intensive treatments survived longer compared to the previous data. This study provides useful information concerning genetic counseling, especially from an ethical point of view, before providing intensive management to newborns with trisomy 13.
Here the are correct terms for the trisomy 13, 18 and 21 Syndromes.
Patau,Edwards and Down. Only Edwards has an S. You'll see many switching these names up with and or without the S but the correct terms for these are - Patau Syndrome,Edwards Syndrome and Down Syndrome.
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
Perinatal Hospice Palliative Medical Symptoms Treatment Trisomy 13 Prognosis life expectancy
Cardiac Surgery Survival - Research that Matters
View more children living with trisomy 13, Patau Syndrome off the Trisomy 13 LIFE facebook Group ~ A Living with Trisomy 13 Community ~ www.facebook.com/Trisomy13LIFE and SOFT's Support Organization for Trisomy facebook Group www.facebook.com/groups/TrisomySOFT
Josiah and Natalia were Celebrating Josiah's 6th birthday.
In 2016 Josiah is now 18 years old and Natalia will be 16 years old in Aug 2016.
Trisomy 13 Family Support on Trisomy 13 LIFE facebook Group
A livingwithtrisomy13 community https://www.facebook.com/groups/TRISOMY13
