Merry Christmas from the Trisomy 13 Life Support Group

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
the facebook group.

Be sure to watch the VIDEO
http://trisomy13life.blogspot.com/2016/12/perinatal-care-continuing-your.html

Trisomy 13 LIFE Celebrates our Children and Families Summer Fun

              

Summer and Water 13 Fun 2016
To view the images in large view click to the Trisomy 13 LIFE  facebook Group.

Look to the SOFT Website for the latest on Trisomy Research and Publications
SOFT Support Organization for Trisomy 18, 13 and Related Disorders
Trisomy.org
LIKE the Social Media areas associated with the Living with Trisomy 13 Community
Trisomy 13 LIFE
GROUP facebook.com/groups/Trisomy13
PAGE facebook.com/Trisomy13LIFE
BLOG Trisomy13Life.blogspot.com
TWITTER @trisomy13patau
twitter.com/trisomy13patau

Happy Mother's Day from the Living with trisomy 13 Patau Syndrome Community

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.


www.LivingWithTrisomy13.org 

Currently rolling to the facebook public support group.

Study - Patau Syndrome - Trisomy 13 survive longer with intensive treatment.

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.

‪#‎Trisomy13‬ ‪#‎Prognosis‬ ‪#‎Intensivetreatment‬ ‪#‎Survival‬ ‪#‎Naturalhistory‬

Patau Syndrome - Trisomy 13 stories added in September to the trisomy.org NEWS and UPDATE page

Trisomy.org 

Be sure to check out the wonderful Videos, Slideshows, 

and Family Stories.
You can "follow-this-page" on the NEW Family Stories page 

Patau Syndrome - Trisomy 13 - Our Children are not a Diagnosis: This experience of parents who continue their pregnancy after a prenatal diagnosis of Trisomy 13 or 18 - Full Publication

#PatauSyndrome #EdwardsSyndrome

Honored to call Barb Farlow a Friend, she's been an amazing advocate for Trisomy Families. You can reach Barb Farlow off the International Trisomy Alliance website. www.internationaltrisomyalliance.com

Article - Our Children are not a Diagnosis: This experience of parents who continue their pregnancy after a prenatal diagnosis of Trisomy 13 or 18  Click for full pediatrics aap publication
Jennifer Guon, Benjamin S. Wilfond, Barbara Farlow, Tracy Brazg, Annie Janvier

CLINICAL GUIDELINES AND IMPLICATIONS

Based on the information obtained in this study from parents who continued their pregnancy after a diagnosis of T13-18, we offer suggestions to assist healthcare providers to provide optimal prenatal care.
1. At the time of diagnosis, provide accurate survival figures. Avoid words like “lethal,” “incompatible with life” and “vegetable”. Avoid value-laden language related to disability.
2. Parents should be informed that most parents who chose to continue pregnancy have reported a positive and enriching experience regardless of the lifespan of their child.
3. Parents who decide to continue their pregnancy need support, not judgement or pressure to change their choice. Parents accept that early death is likely and they have chosen to value the time they have, both before and after birth.
4. Remember that to these parents, their child is a person, not a diagnosis. Refer to the unborn child by name, if possible. Parents expect to receive medical information related to their child, not to the diagnosis.Informing parents of normal organs in addition to anomalies is greatly appreciated. Offer hope when it is reasonable: hope that baby will continue to grow in utero, hope that baby will be born alive and that parents will enjoy some time with baby.
5. Offer to continue prenatal and fetal care as for any pregnancy. Ultrasounds are very special, memorable events and given the high risk of miscarriage, might be the only time parents will see their living baby. Taking a few minutes during the ultrasound to point out normal or “cute” features of the baby can be a lifetime gift to parents.
6. Guide parents to create a birth plan that is best for their child and family. Parents should understand that children with T13 or 18 are unique and some might benefit from life sustaining interventions while some may be harmed by them. Ensure that the birth plan includes collectables for memories such as foot prints and photographs. If indicated, be transparent with parents about any hospital protocol or policy that restricts certain interventions to babies born with T13-18. Parental challenges to these restrictions should be discussed in a multi-disciplinary meeting or ethics consultation.
7. Most parents who choose to continue pregnancy do so because it is the better path according to their personal beliefs. They appreciate empathy and kindness on their extraordinarily difficult journey, especially recognition of and respect for their love for their child."

The Experience of Families With Children With Trisomy 13 and 18 in Social Networks- Full Article

Article - The Experience of Families with Children with Trisomy 13 and 18 in Social Networks 

Annie Janvier, MD, PhD, 

Barbara Farlow, BEng, MBA, and 

Benjamin S. Wilfond, MD

CONCLUSIONS: Parents who engage with parental support groups may discover an alternative positive description about children with T13-18. Disagreements about interventions may be the result of different interpretations between families and providers about the experiences of disabled children and their quality of life.