Showing posts with label patau syndrome. Show all posts
Showing posts with label patau syndrome. Show all posts
Thursday, December 22, 2016
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
Back to School 2016 Trisomy 13 Life - A Living with Trisomy 13 Community
Trisomy 13 LIFE ~ A Livingwithtrisomy13.org Community
Back to School September 2016
To VIEW the photos in original size click to the facebook group
Be sure to watch the VIDEO
http://trisomy13life.blogspot.com/2016/12/perinatal-care-continuing-your.html
Friday, September 23, 2016
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
Saturday, May 7, 2016
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.
Monday, April 18, 2016
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.
Wednesday, March 16, 2016
World Patau Syndrome Day - March 13th
World Patau Syndrome Day 2016 March 13th
Meet Our Families
Living with Trisomy 13
www.livingwithtrisomy13.org
Meet Our Families
Living with Trisomy 13
www.livingwithtrisomy13.org
Preborn, Prenatal, Living and Treasured Memories
Trisomy 13 Life Expectancy
Trisomy 13 Life Expectancy
Wearing Yellow for
World Patau Syndrome Day
International - Global - World
International - Global - World
March 13th is Trisomy 13 Awareness Day
Collage of Trisomy 13 LIFE fb group shared photos.
Treasured Memory and Living Children Families
Sunday, March 6, 2016
World Patau Syndrome Day 2016
World Patau Syndrome Day 2016
March 13th
Meet Our Families
www.facebook.com/groups/Trisomy13
Preborn, Prenatal, Living and Treasured Memories
SOFT USA Embrace the Journey Trisomy Awareness
Trisomy Awareness Cause facebook Page
View these Precious Children Profile images
View these Precious Children Cover banners
March 13th
Meet Our Families
www.facebook.com/groups/Trisomy13
Preborn, Prenatal, Living and Treasured Memories
SOFT USA Embrace the Journey Trisomy Awareness
Trisomy Awareness Cause facebook Page
View these Precious Children Profile images
View these Precious Children Cover banners
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
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
Friday, February 5, 2016
Trisomy 13 Patau Syndrome Awareness
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
Labels:
health,
medical care,
patau syndrome,
rare,
trisomy 13,
trisomy 13 awareness,
trisomy 13 life expectancy,
trisomy 13 prognosis,
trisomy 13 support,
trisomy 13 symptoms,
trisomy 13 treatment,
trisomy awareness
Monday, January 11, 2016
To every thing there is a season, and a time to every purpose under the heaven ~ Ecclesiastes 3:1-8
~ Season of Winter ~
To everything turn, turn, turn.
There is a season turn, turn, turn.
And a time to every purpose under heaven...
Video by the Byrds with Lyrics
UPDATE 2016
Living with Trisomy 13 Families
Living with Trisomy 13 Families
Sharing Patau Syndrome Daily LIFE
facebook Group returns to a PUBLIC Group
Treasured Memory Families Private Group
Friday, December 4, 2015
Trisomy 13 LIFE Expectancy, Pictures, Prognosis, Symptoms and Treatment
Come meet many more
Trisomy 13 Survivors on the Trisomy 13 LIFE Patau Syndrome Group
Those with Survivors sharing Daily Trisomy 13 LIFE, milestones and accomplishments.
www.facebook.com/groups/Trisomy13 Prenatal - Expectant parents support offered also. *Families are also encouraged to JOIN the SOFT facebook group where all variations of trisomy gather. www.facebook.com/groups/TrisomySOFT
SOFT is the internet's most complete source of medical and family resources for trisomy 18 & 13. www.trisomy.org
Meet more families like Natalia on the facebook online support groups /Trisomy13 & /TrisomySOFT |
(top row) NICU - 11 days, Full trisomy13 Birth to 13 years (4 photo collage -with mold of hand before her extra digits (Polydactyly) were removed, 1 week old picture, Kindergarten photo, and Rainbow shirt standing at age 13.) 2 year photo sitting with some support.
(middle row) Natalia's first wheelchair for alignment 3 yrs old, Playing with her sibling, Gift of Time with Santa
(bottom row) 5 yrs using her reverse k walker with with guidance, 2014 SOFT Trisomy Awareness Shirt at 14 years, Walking and pushing her brother at the Annual SOFT Convention where 100's of Trisomy Families gather each year. www.trisomy.org
Natalia's SOFT Story
Natalia's Trisomy Favorite Things BLOG - Flipcard design
Natalia was born in 2000. Thankfully she surprised us at birth with her Trisomy 13 symptoms. When given the trisomy 13 prognosis and trisomy 13 life expectancy, we chose trisomy 13 treatment which IS medical management with any medical condition which they would treat on a typical child. The trisomy 13 patau sydnrome malformations were done. Now we chose to pray and allow good medicine to help our child just as we would do for any of our typical children. Natalia was taken to NICU right after birth and given the appropriate care with the oxygen she needed for the first few days. We left home with a Haberman bottle feeding system for cleft lip and palate.
Back to the hospital at 6 weeks for a g-tube insertion, complete malrotation repair and the rest is history. ~ A Joy-filled life with this very sweet child.Often families searching for support want to know what trisomy 13 life is like. What can they expect. Surgeries etc. What kinds of surgeries did your kids need? And what is their functional status at their current age? Are they walking? Talking? Eating on their own at all?My reply back to one women was this: I want you to not freak out when you hear or see the list of things with these kids. For example my child is 15 yrs old. Can you imagine trying to list all the stuff for your typical 15 yr old. Bangs bruises, stitches. Emotional hurts etc. I can assure you I've said this to many others and others have also said this to me. I've raised 3 other typical kids and frankly they are more work than my trisomy 13 child. I just traded doc visits and therapy visits instead of ballet, soccer or volley ball games with this one child. Each child is so very different. You just take one day at a time just as you do with your other kids. You adjust along the way, just as you do with your other kids. There was no map or plan with my other kids. Months to years were a surprise. Same with these kids. Families want to know everything. Just do what you can, address issues as they come up, enjoy where you are at ~ at any given moment. You dont want to have spent your time worrying, wasting good moments worrying ... find the JOY in today, we never know what tomorrow will bring. Stay connected on a few facebook support groups ... this one Trisomy 13 LIFE, the SOFT group and if you find others where you are comfortable. I've found I can only follow a few just due to time.
#trisomy13 #PatauSyndrome #trisomy13LIFEexpectancy #trisomy13symptoms #trisomy13pictures #trisomy13prognosis #trisomy13symptoms #trisomy13treatment.
Wednesday, September 30, 2015
Patau Syndrome - Trisomy 13 stories added in September to the trisomy.org NEWS and UPDATE page
Be sure to check out the wonderful Videos, Slideshows,
and Family Stories.
You can "follow-this-page" on the NEW Family Stories page
You can "follow-this-page" on the NEW Family Stories page
Monday, September 28, 2015
Caring for Infants with Trisomy 13 - Patau Syndrome from the National Institute of Child Health and Human Development
Caring for Infants with
Trisomy 13 or Trisomy 18
National Institute of Child Health and Human Development
Researchers also found that the timing of the diagnosis impacted the infant’s treatment plan. Physicians and families elected to limit intensive care in the delivery room in more than 90% of births when T13 or T18 was confirmed prenatally. Comparatively, in cases where the T13 or T18 was diagnosed after birth, more than 90% of infants initially received full intensive care in the delivery room.
www.nichd.nih.gov/research/science-advances/Pages/infant-care-trisomy1318.aspx
SOFT Support Organization for Trisomy 18, Trisomy 13 and Related Disorders
35 years of Support Resources
www.Trisomy.org
Trisomy 13 LIFE - Patau Syndrome Family & Professional Support Group
FB Page www.facebook.com/Trisomy13LIFE
FB Group www.facebook.com/groups/Trisomy13
Sunday, September 27, 2015
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 |
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
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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."
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.
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
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.
Labels:
Edwards Syndrome,
eithics,
ethics,
families,
genetics,
healthcare,
infants,
life expectancy,
living,
medical,
meidcal,
neonatal,
patau syndrome,
screening,
study,
support,
testing,
trisomy 13,
Trisomy 18
Subscribe to:
Posts (Atom)