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

Trisomy Documentary Shares the Experience Newly Diagnosed Families Face

CLICK photo to view the Trailer
http://labeledthemovie.com/

Like Labeled Documentary   on Facebook! (click here)

Trisomy Family and Professional Support www.trisomy.org

If your Trisomy Baby Could talk... making the right decisions for your Trisomy Journey

To all the Trisomy Parents wondering what decisions to make after their child's diagnosis...
Prenatal or Postnatal (afterbirth diagnosis) 
Carrying to Term, Perinatal Hospice, Palliative Support, 
Medical Treatment, Surgical Intervention and Supportive Living Care.
If your Baby could talk... this is what your baby would say...   
View on youtube - https://www.youtube.com/watch?v=kXtllFhGOsI

View on youtube - https://www.youtube.com/watch?v=kXtllFhGOsI

NEW FAMILY FREE INFORMATION PACKET at www.TRISOMY.org
LIKE and FOLLOW Trisomy.org's Facebook Page and Group

International Trisomy Alliance http://www.internationaltrisomyalliance.com
ITA publications you can download and print FREE

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

TRISOMY.ORG - SOFT E-mail Blast! - Current Events! - Hot Trisomy NEWS Topics & Updates!

Did you receive a SOFT e-mail blast within your e-mail inbox yesterday? 
5 Current SOFT Community topics of interest.
If not... Register NOW ITS FREE!!!

Join the www.Trisomy.org 

SOFT Facebook Page and SOFT Facebook Group 

Valentine’s Video of Our Amazing Trisomy Children on then SOFT Trisomy.org website

Trisomy Valentine’s Video - http://trisomy.org/?page_id=14463

To view off YOU TUBE https://www.youtube.com/watch?v=5ez27Rl_3rI

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

Christmas in Heaven - Official Lyric Video for Maribeth Johnson - Mom to Abbie Ann (Trisomy 13 embraced and loved for 36 weeks)

Inspired by Abbie Ann who lived 36 weeks with Trisomy 13. Christmas in Heaven - Official Lyric Video for Maribeth Johnson - SOFT Family Stories shares the iTunes, website and story behind the music.
http://trisomy.org/our-story/abbie-ann-johnson/

SOFT Facebook Page

https://www.facebook.com/Trisomy18.Trisomy13.Awareness.SOFTrelatedDisorders/posts/629157053792002

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 

2013 SOFT International (Annual) Conference Photos

SOFT Facebook PAGE 

SOFT Facebook Group

SOFT Stroll for HOPE - Providence

SOFT Stroll for Hope  ~ Join Trisomy 18, 13 and Related Disorders Annual Fundraising Campaign
Held at the Annual SOFT Conference
see the Website for more Information www.trisomy.org

http://www.firstgiving.com/softstrollforhope

Donate today to help SOFT support Trisomy Families

• 

  Natalia's HOPE

  
  

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 

EWTN It's EVERYWHERE ~ I did not know this! LOVE IT!!!

EWTN - WE'RE EVERYWHERE!

It's easier than ever to access EWTN and enjoy all the Global Catholic Network has to offer!

With English and Spanish programs offered through television, radio,
online and even on your mobile phone, we can truly say, "EWTN is everywhere!"

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 

Letter to Physicians: Patients Plan of Care - Faith in Action

• Treating Mother/Child with an Incompatible with Life Diagnosis
• Treating child with chromosomal abnormalities
  
  
  
  

  Please realize the medical intervention or treatment for my child is more than just a diagnosis of my child's health.  My child's syndrome is also an opportunity for our family to live out our Christian faith, our inner spiritual beliefs and show the moral dignity of life that God has entrusted us as part of our parenthood.  Allow me to explain …

  
  

  
  

  When we ask what we can do to help our child diagnosed with Trisomy 13, you are allowed to give your professional advice based on the outcome of the diagnostics specifically related to my child; but, do not persuade us to take actions against our inner core of beliefs.  Do not influence us to make decisions based on a “typical text book diagnosis” of Trisomy 13 or influence us to make decisions based on children with a different onset or different particular set of medical issues.  Instead, stay focused on my child's best plan of care as an individual and based on our family’s faith values.  To be helpful to parents, ask “what if” questions or give scenarios that may play out in this situation and give parents time to think through their intended response in relation to the families’ core belief system. 

  
  

  
  

  
  

  Taking a path of life for our child’s health in light of “certain death” is just as difficult for our family to bear as letting go of the life we have grown to love.  The middle is equally as tough – living a life of hope amidst the lost expectations for our family.  But this portion of grief remains within our spiritual journey, not our medical journey.  As a physician, your role is to help us in making a plan of care for our child's life, in light of “end of life” eventualities.  Our physicians input helps both our medical and spiritual journeys as it intertwines the relationship between living out our faith values at a most difficult time and providing dignity of life and follow through services. 

  
  

  Knowing our little one may have a much shorter or potentially longer life than expected also leads our family to discussing and coping with our child’s eventual death.  There is no easy way out of this painful experience of mourning the expectations gained with pregnancy and lost upon learning this diagnosis.  Termination is against our Christian faith and I do not consider any form of abortion therapeutic.  Others who have had these procedures to their physical body have had no therapeutic procedure to aid in the emotional or spiritual consequences. 

  
  

  While an attempt to allow the baby to die before its life is viable outside of the womb may end the visible outcome of the pregnancy, the pain of it all remains with the parents and family and portions of this grief journey continue to manifest both physiologically and psychological to all family members, not just mom and dad.  So then, does abortion really end the visible outcome, or merely mask the inner continuation? 

  
  

  Christians are seeking to live our faith by accepting natural life (life from conception to natural death) which is healthier for us to cope with and maintain obedience to our spiritual beliefs and moral conscience; although, none the easier to deal with.  All families who suffer the loss of a loved one are encouraged to seek support for their feelings of bereavement. 

  
  

  Doctors, as you deal with parents of a child diagnosed with a severe chromosomal abnormality, realize that the parents of these children are forced to prepare for all aspects, which may include an early death, funeral arrangements as well as a longer life, quite possibly with a severely disabled child.  Our Christian faith believes that miracles happen and when you take away our hope of being able to care for this sacred life in the manner in which God has presented it to us, you kill our faith, not our worldly dreams and certainly not our sorrows.  As parents, we are obliged to think through all circumstances and prepare for each situation as they may occur in our child's health. 

  
  

  I reiterate, taking this plan of life for our Trisomy 13 child’s health is just as difficult to bear at times as other (lawful) alternatives; but as Christians, it is the only path that is morally correct.  Ask parents “what if” questions to help them think through scenarios.  Support a plan of care that can be carried into a program to set goals if this child is a survivor and above all, listen to the parents to understand their directives for their child in light of this diagnosis. 

  
  

  We, parents, need our child’s physicians, to be supportive of our syndrome child as well as compassionate of our underlying spiritual beliefs.  As all humans who carry emotions, guilt and sorrow for loss, we DO sometimes second guess our actions, which is why it is critical that as parents we surround ourselves with those who can be supportive of our Christian faith values and help us along the medical side of this journey.  If you are a physician called to practice these beliefs, feel free to reference your office as a Trisomy Friendly or Rare Medical Diagnosis (RMD) Friendly physician’s office.  Links to your business, website or services will be added to our website upon request.

  
  

  Peace and Blessings to you for your support,

  
  

  © Janina E. Arritola 2006
  (used with permission from http://gregoryarritola.tripod.com/letters.html_

  
  

  More Photos of Anthony - off Janina's Tri-pod site

  
  

Little Miracle in Progress...Still bringing us JOY!

In January of 2010 I was hoping I could one day tell you Natalia is talking.... Well I have some really Great NEWS to share. :)

A few days ago, while in the presence of two of our friends. We all heard Natalia say "Help me"-- What JOY!!! Two words, at the appropriate time and put together... I can't even express how much excitement was in the room.

My friends husband thought he heard Ma... Help me... which is probably what preceed it but I was just down the hall tossing a diaper in the trash.  I had stood Natalia up and let her walk to the nearby recliner chair as I headed a different direction from her. She did seem a bit wobby on her feet but I knew she'd catch her balance, so I let go of her a few feet from the chair and let her make her way to it.  I am guessing  she knew I was not right behind her so that is why she holared these WONDERFUL words!

How will you move forward? REVERSE MOMENTUM--EUCHARISTIC ADORATION

REVERSE MOMENTUM--EUCHARISTIC ADORATION
http://bestofspiritjuicestudios.blogspot.com/

Praying the Rosary for Trisomy Children - Please Join with us

Please join us when you can in praying a Rosary for a little Trisomy 18 girl.. Beautiful Jill DelSignore daughter Giuliana is in critical condition. http://www.youtube.com/watch?v=mSKsCW4WxUw
You can keep updated on the SOFT page
https://www.facebook.com/groups/TrisomySOFT

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

SOFT Times Newsletter

SOFT Times Newsletter

The SOFT Times - A newsletter for families 

with children who have chromosome disorders

The SOFT Times newsletter has helped connect families for nearly three decades. Letters from families and articles from professionals are compiled, edited and printed in a quarterly newsletter, which is mailed to SOFT members who have paid their current yearly membership fee, and to professional members.

The SOFT editor is a parent volunteer who takes on this task four times a year. SOFT pays for the printing and mailing of the SOFT newsletters. The free SOFT welcome packets for new families contain a sample newsletter as well as information about trisomy conditions and the SOFT support organization...MORE

There is a link on the SOFT page to see a SAMPLE NEWSLETTER.. well worth a view.

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

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

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