Trisomy 13 Life ~ Patau Syndrome Medical Care = Long TermSurvivor

Trisomy 13 Prognosis & Trisomy 13 Life Expectancy 

While there is no specific treatment for "Trisomy 13"
There is effective ‎Precision Medicine‬
and much progress,  lessons learned, 

for effective medical management
for the many trisomy 13 related medical conditions.
You can follow other families with trisomy 13 Patau Syndrome survivors at
www.livingwithtrisomy13.org (Public Trisomy 13 Daily Life facebook Group) and www.trisomy13life.com (Public Trisomy 13 Life facebook Page)                                      

Each child presents their own unique medical issues with their trisomy 13 variation. Whether full (complete), partial, translocation or mosaic.  There is Care book and a wealth of relevant literature on several of the trisomy support sites, including
SOFT Support Organization for Trisomy 18 13 and Related Disorders www.trisomy.org 
Be sure to view SOFT's Dear Health Professional page   Be sure to view SOFT's drop down Professional MENU   Professional Literature:   Cardiac Surgery, Ethics, Management 
as well as the TRIS Tracking Rare Incidence Syndrome site. Publications and Presentations  http://tris.siu.edu/publications-presentations/index.html
You can follow other families with trisomy 13 Patau Syndrome survivors at
www.livingwithtrisomy13.org (Public Trisomy 13 Daily Life facebook Group) and www.trisomy13life.com (Public Trisomy 13 Life facebook Page)                                                                                                                                                                     

Natalia in a quick 9 photos sharing what is possible with good medical care. Medically treating what we could to help Natalia live comfortably within this trisomy 13 syndrome. I was told by her first teacher, that "Natalia was the most well adjusted child she's ever seen, given all her limitations."
I think its all about attitude. She awakes happy and so starts our day.
Full of Love and JOY. I am too Blessed to be Stressed and have an Attitude of Gratitude for this entire journey. I accept it all knowing God will continue to shower graces upon us as we continue to Sing Glorious Songs of Praise for her life. Natalia like all these Trisomy 13 kids are Miracles in Progress. Our only job is to love them unconditionally and celebrate each wonderful milestone.

Natalia has full, complete trisomy 13, also called Patau Syndrome. Our Trisomy 13 Journey with her as been one of becoming an advocate for those sharing this trisomy 13 journey. From the living with trisomy 13 community to trisomy 13 daily life, we continue to share trisomy 13 awareness helping the newly diagnosed families and those with living survivors live with this unique rare conditions. Some call it a rare disease, but its a syndrome.                                                                                                                                                                                                                          

Trisomy.org the 2014 Annual SOFT International Conference is going on now in Virginia

For the MOST Current Trisomy Support www.trisomy.org
Just a quick link right to the FACEBOOK page where photos and videos are being shared.
https://www.facebook.com/Trisomy18.Trisomy13.Awareness.SOFTrelatedDisorders

Trisomy Care of the Infant and Child with Trisomy 18 and 13 Related Syndromes

The updated 2014 version of Ann & John Carey's "Carebook" is finished and has been posted to the website. It is an e-Book and is a FREE download.

www.Trisomy.org

To PRINT do directly to the PDF

March is Trisomy Awareness Month

www.TRISOMY.org

Free Information & Literature for  Families:  Clicking this link takes you to a brief form which, when completed, opens a page with many free documents about trisomy.  Select what interests you and read, print or save it.    This free information includes Trisomy 18, Trisomy 13 and Other Chromosome Disorders fact sheets, growth and surgery information, an explanation of common problems, sample newsletter,  conference and book order information, and much more.   At the bottom of this home page, several helpful and inexpensive books can be ordered.  Para  documentos en español, clic aqua.

 Trisomy 18 – What is it? …click to read “Trisomy 18 Facts.“  This syndrome is a disorder of human chromosomes which occurs in approximately 1 in 7,000 live born infants, due to the presence of an extra #18 chromosome…

♥ Trisomy 13 – What is it? …click to read “Trisomy 13 Facts.“  This syndrome is a disorder of human chromosomes which occurs in approximately 1 in 10,000 live born infants, due to the presence of an extra #13 chromosome…

♥ Other Trisomy or Related Conditions:      Many families have children with other chromosomal disorders. Perhaps the best explanation for these many disorders is found in a Related Disorder Facts presentation by Dr. Stephen Braddock, Professor of Clinical Genetics, given at a SOFT Conference. Also, read about Dr. John Carey’s presentation at a  SOFT conference.   A useful video can be found here.

WWW.TRISOMY.ORG

3 Tickets for $10 or
9 Tickets for $25
Enter as often as you’d like during the month of MARCH!
Winners name will be draw by SOFT’s President, Barb VanHerreweghe on March 31st
When DONATING, be sure to ADD the term *SPECIAL TREATS JAR RAFFLE* in the Special Purpose Donations BOX right above the SEND MY DONATION button.
http://trisomy.org/about-us-trisomy/donate-to-soft/ 

* A big THANK YOU to Penny, Devon’s momhttp://trisomy.org/our-story/devon-victor/ who created this Special Treats Jar. (Valued at $80)
1) A special needs child being pushed by an Angel surrounded by flowers, butterflies, dragonflies under a Rainbow in the Heavenly Clouds
2) Heavenly Angels over the rainbow, grabbing the balloons rising to the heavens
3) Tree of Life where birds, butterflies and dragonflies gather
4) A families love is shared around the world

You can see more of Penny’s creative talents on her Facebook page Clay Cuties by Pennyhttps://www.facebook.com/ClayCutiesbyPenny

Natalia is approaching her 13th Birthday - Living with Trisomy 13

Natalia 13 years old - Living with full Trisomy 13

Trisomy.org SOFT Family story page http://trisomy.org/?our-story=natalia-marie

Family Trisomy Support Information - TRISOMY.org

Growth and Weight Chart Information under the RESOURCES drop down menu

~ SOFT Trisomy Registry Information ~  It's FREE

http://trisomy.org
Click the REGISTRY drop down menu

Register to receive access to the Online quarterly 

SOFT Times newsletter highlights Articles, 

Trisomy Life Experiences and Events, Photos and Family Stories

SOFT Trisomy 18, 13 and Related Disorder Family Stories 

Mom and Natalia with her Sea World Float,
She LOVES pool time.

 l

Trisomy.org Growth Chart Images 

Trisomy Mother's Baby and Children - SOFT Support Organization for Trisomy 18, 13 and Related Disorders Mother's Day 2013 Slideshow Presentation

SOFT Trisomy Families Celebrate Mother's Day!
Look at this Beautiful Collection of Mother's and their babies and and children, embracing cherished moments. 

Slideshow Presentation 
trisomy.org  (click here)
(scroll down the page to view)

March is Trisomy Awareness Month - 2013

SOFT Support Organization for Trisomy 18, 13 and Related Disorders invites you to meet our children through photos provided by their families and scripted by SOFT parent Gerri Meggett of the SOFT Trisomy Awareness committee. 

Come and “enjoy the SOFT rainbow” of life and love with words to make you smile at www.trisomy.org New photos will be featured each day of March. 

Support Organization for Trisomy 18, 13 and Related Genetic Disorders (SOFT) www.trisomy.org 

March is Trisomy Awareness Month! 

SUBMIT your Triosmy Awareness Event and Inspired IDEAS on the SOFT website. trisomy.org/trisomy-awareness-month 

Be sure to add the SOFT Page and Group to your Favorites *adjusting your notification delivery so you can see the daily activity. 

SOFT's Facebook PAGE www.facebook.com/Trisomy18.Trisomy13.Awareness.SOFTrelatedDisorders
SOFT's Facebook GROUP

www.facebook.com/groups/TrisomySOFT 

2013 - NEW *** TRIsoMY Favorite Things *** BLOG

BLOG - NEW 2013 TRIsoMY Favorite Things 
13th Monthly Gift Give Away page.

Natalia is approaching 13 years... How awesome is that? I could only dream she would have survived this long. What a journey!

2013 TRIsoMY Favorite Things.
Its a work in progress as everything is, adjusting as we go on this life journey.

TRIsoMY Favorite NEWs and VIDEOs on SOFT trisomy.org 

2013 SOFT USA Support Organization for Trisomy 18, Trisomy 13 and Related Disorders (trisomy.org)  Launched their new website format. What a welcome surprise to see all the updated changes. Easy to access Trisomy Medical Professional Information and a wonderful Trisomy Family Stories page.  The SOFT website offers Trisomy Families Hope and a wealth of Information for  Trisomy Awareness News and Resources for Trisomy Special Needs Families 

Trisomy 13 and 18 Families Continue to SHARE their Experiences.

I came across a wonderful article from Susan Hatfield and wanted to share it as her words echo many of my own thoughts on our own Trisomy 13 Journey with Natalia. 

Families in 2012 have a wealth of trisomy medical health support options when carrying to term a trisomy 13 child. Or, if given the genetic profile at birth as we were with Natalia, there are many living trisomy support groups to help these families.

Feeding Tubes, NICU, One-on-One Care: Susan Hatfield Talks About Living with her Trisomy 18 Baby

There are many great doctors who have cared for Zane. There are many not-so-good ones as well. While Trisomy 18 is usually fatal, it is not always. And even with the shortened life expectancy of children living with the diagnosis, there should be a level of compassion on the part of the medical world when handling families such as ours.

We appreciated the neonatologist’s honesty about the statistics associated with Trisomy 18. But Zane is a living example of how the medical community is not the end-all of knowledge. They do not have crystal balls or prophetic gifts. As such, many of them should not pretend that they do. We had little or no hope for our son. With the doom and gloom presented to us, we lived in a place riddled with anxiety and hopelessness.

This is not how it should be with an extra 18th chromosome. Everyone, regardless of genetic makeup, ability, or disability, should be treated with kindness and compassion, especially when their lives are so limited. Read More

SOFT has been supporting Trisomy Families & Professionals 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

Looking for Trisomy Support? Be sure to also check out  FACEBOOK Pages and Groups.

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

Should pregnant women be offered genome screening for their unborn baby?

My personal feelings are I would NOT do this new Noninvasive Prenatal Test for Common Fetal Aneuploidies if I were to be pregnant again. There are too many managed care systems (whether medical groups, hospital or paternalistic attitudes) that go into play when they know your child has what some determine a futile to treat medical condition.

(the original title was:  Sequenom test for Down syndrome & Trisomy 18 gives pregnant women wrenching choices in nation polarized over abortion 
sandiegobiotechnology.com/topics/2607/sequenom-test-for-down-syndrome-trisomy-18-gives-pregnant-women-wrenching-choices-in-nation-polarized-over-abortion )

- noticed the title of this article has been adjusted

3/2013 new title is...  

Test for Down syndrome & trisomies

gives wrenching choices  click on title for original article.
Edited in March 2016,
I have the PDF of this as they've now removed this entire quote. 

A quote under a photo, within a biotechnology article 

 “The growth of prenatal genetic testing is creating an even larger number of situations in which pregnant women must prepare to say their good-byes all too soon,” 

The test which is currently available in more than 20 large metropolitan areas in the U.S., can be performed as early as 10 weeks’ gestation. At-risk pregnant women are seeking the test even though the results will inevitably put more of them in the position of making heart-wrenching personal decisions in a national political climate sharply polarized over abortion rights.

MUST? really MUST, thats a bit scary, thankfully we are NOT YET at a point where its mandatory women take this test within insurance programs. - Women have a choice to take this 10 early week test, bringing the early test results into their prenatal journey. Is this where National Health Care and or Prenatal Palliative Care is going? Ethically, I URGE you to  - Be WISE, Get Well Informed, Do your own homework, this is Your Child, Your Family, Your Choice.
****************************************************************

Knowing what I know after years of Trisomy Support with hundreds of families, I would urge families to consider - first, - If You would not abort, than why cause yourself added Prenatal Stress. Once a Prenatal Diagnosis comes into play, Managed Health Care begins. While some Families share amazing support stories, others do not. Families have shared all sides of this Trisomy life journey online websites as well as the SOFT USA site.  Personally, I am so very glad I did not know prenatally and glad my child was whisked off to NICU with the visual at her birth of the extra pinky's and cleft lip. She was given appropriate newborn care with oxygen. We made choices from there with a supportive team of Professionals that I have adjusted over the years, as needed.

Today we have a wonderful (full trisomy 13) child who blesses our life each day. Each Trisomy child is so very different, these tests lump them into a category which would send any new family into the fears of the unknown. Making permanent and sometimes choices they regret.  In all reality, Natalia has had 98% of the listed expected trisomy medical conditions, she would be what some would term, 'most severe case,' as she is full trisomy 13.

There are many variations of the medical conditions and no one knows how long each child will live. There are some very serious medical conditions (cyclopia, proboscis, CDH Congenital diaphragmatic hernia and Tetrology of fallot and some other serious heart conditions) that MAY only offer you a short time with your child, however, in recent years trisomy children have been getting the heart surgeries including surgery for those with Tetrology of fallot. Be sure to contact the 
SOFT Surgery Registry 

When approached about a surgery SOFT provides:

• Total numbers for specific surgery
• Diagnosis of children who had the surgery
• Reported outcomes
• Name of hospital and surgeon name, if available

Sometimes the Blessings of the Unknown are more Blessings than you could possibly imagine for your family. Trust in our Good and Wise Lord, he will offer you the Graces needed for this Life Journey. That is the good news... Statistics show that the families who reach out to online trisomy medical support and then through resources find local support,  emotionally manage better with the many stages and the emotional cycles of this trisomy life journey. SOFT Support Organization for Trisomy 18, 13 and Related Disorders and the many FACEBOOK support pages within Trisomy Advocacy Support.

Should pregnant women be offered genome screening for their unborn baby?
I believe soon, very soon, we will begin to see stories of families who have done this early 10 week non-invasive test, only to choose to continue to carry to term a child with a poor prenatal diagnosis...

Eventually we'll hear stories of the extraordinary pressures in some cases to terminate using medical professional terms such as: medical need, abortion, abort the pregnancy, elective termination (elective tx), fetal reduction, feticide, interruption of your pregnancy, interrupt pregnancy, late termination of pregnancy (TOP), selective and early induction, prostaglandin stillbirth, selective fetocide, therapuetic abortion, termination for medical reasons, saying goodbye early....
  

Others will share the Blessings of these precious kids, the moments the possibilities.  SOFT Family Stories

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

You Can Help CREATE CHANGE in how Trisomy kids are Medically Treated by SHARING YOUR FAMILY Trisomy 18, 13 or Trisomy Related Disorder STORY

SHARE Your living trisomy Family experience on SOFT USA. 
Support Organization for Trisomy 18, 13 and Related Disorders

SOFT USA is the one website Families & Professionals go to when looking at the most current literature on Living Surviving Trisomy kids. The National Library of Medicine NLM and the National Institute of Health NIH Share the SOFT website as the 33year strong website supporting Families and Professionals. Your childs' story trisomy medical issues and experience will make a difference for families to follow.

TRIS Tracking Rare Incidence Syndrome

Be sure to enter the Data (Survey) on Your Trisomy Child to help with the most current Evidence Based Medicine Treatment and Practices for our Trisomy Children

Noahs Never Ending Rainbow  "Noah's Never Ending Rainbow continues to be a support when most other organizations stop giving. They not only care about the person affected with this horrible disorder but also the family."  
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

Celebrating Trisomy Survival ADvertising at its Best!

I just love this !  I believe this is one of the largest visual efforts in image of Trisomy Awareness - technology at its best! Happy Birthday Giuliana, you are looking very healthy - sharing what Trisomy Health and Wellness can be! Beautiful!
~ and Happy Birthday!

June 4, 2012 Raising It to New Heights (click for photo on Jill & Giuliana's blog)

"For Giuliana’s  2nd birthday announcement, we now proudly display THREE 10x 22 huge digital billobards spaced throughout high traffic areas in the city. "

"It has always been our mission to help advocate for those who face Trisomy 13/18 and are not offered options other than Hospice, as we were not.  Parents need to hear both sides of the story, and remember to keep realistic in the approach to this diagnosis. Families have a right to unbiased information upon which to make critical decisions related to their child. Realizing that there is a great spectrum involved and sadly some children with Trisomy 13/18 may not survive, still others may only live a short time. Now, new evidence is showing that in many cases intervention can help more children to live longer lives."

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