Saturday, September 6, 2014

Trisomy 13 Support September 2014 Forward...

NEW Ask A Question on the SOFT Support Organization for Trisomy 18, 13 and Related Disorders (Family and Professional Support Resources)
SOFT facebook Group has Trisomy 13 and many Trisomy Variations (trisomy 18, trisomy 9 and other trisomy conditions) sharing their trisomy experiences and offer daily support to each other. The 35+ year history of SOFT's Trisomy Support continues to bring these many families together and many have met at the Annual SOFT Conferences held typically in July.
and the SOFT facebook Page

Families Living with Trisomy 13 continue to gather on the SOFT support as well as the
Trisomy 13 facebook Group and Page 
The lwt13 community facebook Group is very active.
The lwt13 urls have been down for awhile but they may be up in running in the near future.

The Living with Trisomy 13 ARCHIVE continues to be available online at
325 Trisomy 13 children and family experiences shared from 2005-2010

Thursday, March 13, 2014

Trisomy Awareness Month is March - Children's Photo Poster


Check out this nice poster that Terre Krotzer has created from the Trisomy Awareness Month “covers” with the children’s photos in them. After opening it, use the “+” button to expand it


Monday, November 11, 2013

Trisomy 18, Trisomy 13, Edwards Syndrome, Patau Syndrome

Trisomy 18, Trisomy 13, Edwards Syndrome, Patau Syndrome
Have you visited the SOFT Support Organization for Trisomy 18, 13 and Related Disorders website recently? Many new web site additions and features.
NEW quick 'SHARE this page' app that allows you rot share on Facebook, Google+, Stumble Upon, Blogger, Twitter, Pinterest, Linkedin, Reddit, WordPress and email. Family Support

Be sure to view the HOME page and scroll down viewing the many areas of information.
FREE NEW Family Information Package, Trisomy 18, Trisomy 13 and other Trisomy Related Disorder Information. Surgery and Growth Charts, and Medical Literature. A wealth of resources.
Trisomy Disability Awareness Events and Activities coming up for Trisomy Awareness Month 2014 

Monday, April 1, 2013

SOFT Lights the Way! 27th Annual International Conference
Thursday, July 18, 2013 at 8:00am in EDT

Providence, Rhode Island
Thursday, July  18 – Sunday, July 21, 2013

Meet other families at the
27th Annual SOFT International Conference!

The annual conference is held by a host chapter for families 

and professionals from around the world, to gather and 

exchange information, ideas, scientific data, and to share 

their family experiences.  Information about conference 

activities is found...  click here to SOFT WEBSITE

Friday, March 22, 2013

Trisomy Awareness Month - Banners Created by Trisomy Talk

SOFT Support Organization for Trisomy 18, 13 
Celebrates MARCH 2013 - Trisomy Awareness Month 
SOFT'S Facebook Page Featured Children 
Facebook Photos of Trisomy 18, trisomy 13 and Trisomy Related Syndromes
SOFT has been supporting families for over 33 years and continues to provide support for those with trisomy and their developmental disability special needs.

SOFT - Proclamation from the Governor of Maryland

2013 National Health Observances
March 1 – 31
Trisomy Awareness Month
Support Organization for Trisomy 18, 13 & Related Disorders
2982 South Union Street
Rochester, NY 14624-1926
(800) 716-SOFT -7638
(585) 594-4621
(585) 594-1957 Fax
Materials available
Contact: Barb Vanherreweghe


Trisomy Awareness Banners by Terre of Trisomy Talk

Raising Awareness for Trisomy 2013  by Daisy of Eva's GIFT

Tuesday, February 26, 2013

Routine Health Care - Supervision for Trisomy 18

2013 Welcomes in a NEW support resource with Webinars for both Families and Professionals caring for a Trisomy Syndrome child.

TRISOMY TALK Resources click to view VIDEO 
Routine Health Care - Supervision for Trisomy 18

Upcoming webinar EVENTS
There are plans to have a webinar talk on Trisomy 13 in the near future.

Please be sure to VIEW the wonderful VIDEO by Dr. John Carey, Medical Advisor to SOFT Support Organization for Trisomy 18, 13 and Related Disorders

Thursday, January 10, 2013

Wonderful NEW Trisomy Awareness Video 2013

Annabella Hope & Her Trisomy Miracles Friends!

There is HOPE within these images of trisomy kids with developmental disability. With each video, photo, website, facebook page, families are finding support. 2013 will be a wonderful year filled with Trisomy & Developmental Disability Awareness.

SOFT USA Support Organization for 
Trisomy 18, 13 and Related Disorders
Family Stories and Resources for Families and Professionals

Sunday, December 30, 2012

Risks of Induced Abortion - Termination for a Poor Prenatal Diagnosis

A Spanish Website with a link to the side for Translation to over 60 languages.
 (* you can view in your language)

(translated to English for you)

Nina My Daughter 
The joy in God in a story of Patau syndrome: Risks of Abortion

Risks of abortion

Immediate risks of abortion

Induced abortion carries a risk with various side effects.
These risks include abdominal pain, cramping, nausea, 
vomiting and diarrhea. In most abortions, ... READ MORE
Original Source for this information: Crisis Pregnancy Center Website

One of my favorite Pregnancy Websites - Videos from Conception to Birth
Improving lifelong health one pregnancy at a time.

Monday, December 17, 2012

Online and Local Grief Support - MISS Foundation

Online support is wonderful knowing there are others who have experienced this journey from prenatal, to living, to grief. *However, it does not replace the much needed Face to Face GRIEF support. *Please check with your local Church for the local available grief support. Most Church Communities have something set up, and do check a few if one does not interest you or meet your needs. *The MISS Foundation may be able to help you get started. Here is their facebook page

Here is the website and the grief meetings on a map, contact them and they will be able to help you get connected locally.

This page will help you find your local state and area.

MISS Foundations Support Groups 
Nationally - Internationally - Online


Saturday, October 20, 2012

Striving for Balance Carey Oct 2012 Peds-Opinions

Striving for Balance Carey Oct 2012 Peds-Opinions

The author recommends a balanced approach to counseling families of the newborn with trisomy 18 and 13 at the time of diagnosis. The counseling process should include presentation of accurate survival figures, avoidance of language that assumes outcome, communication  of developmental outcome that does not presuppose perception of quality of life, and respect for the family’s choice, whether it be comfort care or intervention.

Monday, July 30, 2012

Facing Life TV - HOPE for Lilliana (Trisomy 18) Family & Professionals Share on Heart Surgery

Facing Life - Season 6  Episode 11: Hope for Lilliana 


On May 17, 2011, Lilliana Dennis was born to Rhonda and Russell Dennis. But just a few hours after her birth, she was taken for testing that confirmed she was born with Trisomy 18. T18 is a chromosomal anomaly that results in an extra chromosome and has a high mortality rate. In fact, over 90% of babies born with T18 don’t live past the first year. Because of the high fatality rate, most doctors will not offer any treatment options.

After doing research and finding people who were living with T18, Rhonda and Russell decided to advocate for their daughter’s care. As a result of Trisomy 18, Lilliana was born with a large hole in her heart that would eventually affect her longevity. After seeing doctors who refused heart surgery, they met Dr. Sanjay Parikh, a pediatric cardiologist at St.Vincent Health in Indianapolis, Indiana.

Dr. Parikh agreed to do whatever it took to ensure Lilliana had the surgery. But he had trouble obtaining the consent of all the doctors who would be involved in her care. Rhonda and Russell went in front of the hospital’s ethics committee to plead their daughter’s case. After making a strong argument for their daughter’s future, the committee consented for Lilliana to have the surgery.

Lilliana just celebrated her first birthday and is improving every day. Taking care of her requires a lot of hard work and patience, but Rhonda and Russell can’t imagine life without their baby girl. There’s no question that a bias against Trisomy 18 exists within the medical community. But hopefully more stories like Lilliana’s will pave the way for change.

Friday, July 27, 2012

Trisomy - Babies Born With Congenital Anomalies Enrich Families

Photo Noah's Never Ending Rainbow  (facebook) The mission of Noah's Never Ending Rainbow, a national Trisomy organization, is to educate, advocate, raise public awareness, promote strategic alliances.

Trisomy Families Favorite Annual Conference - Prenatal - Postnatal Genetic Resource

Trisomy 13, Trisomy 18 Babies Born With Congenital 
Anomalies Reportedly Enrich Families
An ethicist who was not involved in the study says the findings point to a need to change the messages given to parents-to-be and new parents facing the reality of a baby with T13 or T18, as the conditions are called for short.
"This study should have us stop and think about what decisions, for which children, have been made on the basis of misinformation," says Francoise Baylis, a professor of bioethics and philosophy at Dalhousie University in Halifax.
"The negative narrative needs to change. Parents' experiential knowledge matters and should be available to expectant parents and new parents."
The study, by ethicists and the mother of a child born with Trisomy 13, is published in this week's issue of the journal Pediatrics.  READ MORE

Our HOPE is all Genetic Counseling will begin to share this research study of Trisomy 13 Patau Syndrome, Trisomy 18 Edwards Syndrome and related Trisomy Diagnoses and Genetic Disorders.

‘Our children are not a diagnosis’ – what an amazing response!

Monday, July 23, 2012

NeoNatal Research Comments on Trisomy 13 and Trisomy 18 Family Experiences

Keith Barrington, a neonatologist and clinical researcher comments on the latest Journal Publication in Pediatrics

"Our children are not a diagnosis": the family experience of trisomy 13 and 18 (click here) *Be sure to view the 75 + Plus comments.
Annie Janvier, Barb Farlow and Ben Wilfond have just published a rather disturbing study. At least I feel a bit disturbed. (Janvier A, Farlow B, Wilfond BS: The experience of families with children with trisomy 13 and 18 in social networks. Pediatrics 2012.) It is one of those studies that challenges many assumptions. They set up an internet questionnaire and contacted parents of infants with trisomy 18 and trisomy 13 who belonged to various internet-based support groups.

Keith Barrington - offers some guidelines:  
Advocating for Impaired Children,  
"So here are some guidelines to use when talking with parents who have received a diagnosis, prenatal or postnatal, guidelines that you could develop as a result of these families’ reports of their experiences: ...."
"Our children are not a diagnosis": the family experience of trisomy 13 and 18 
Many wonderful comments too!!!
75 +  Plus at this (update 7/29/12) posting!
In a time where we are being bombarded by Healthcare NEWS, Genetic Medical Ethics - Bioethics  with Prenatal Testing and Screening, its wonderful to see the potential of these kids. Living Survivors with Trisomy Genetic Syndromes.

(Text within image) 
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 

Saturday, June 9, 2012

Video - What is Trisomy?

A wonderful quick visual with some information about Trisomy and why so many families who've experienced this journey would say they would do it all over again. These children are extravagantly loved!

Sunday, June 3, 2012

Sample Newsletter - The SOFT Times

The SOFT Times 
Its wonderful to receive this quarterly newsletter in the mail with wonderful articles, insights, and the many outreach efforts SOFT has provided for Trisomy Families for over 25 Plus years.

*** Be sure to look at the bottom right of page 4 for information on Trisomy 18/13 Research Project 

In this issue
Gifts of the heart from Kris Holladay, founder
Almost Home, a book review by Pam Healey
Dr. John Carey's Professional Viewpoint
Coming Home to SOFT by Bob Irvin
The Medical Intervention Debate by Pam Healy
Trisomy Family by Debbie Brunes

As the LWT13 site moves forward with a new team and their non-profit efforts to help lwt13 families its really nice to keep connected with the Global Information Hub that brings all Trisomy Rare Disorders together with this newsletter and yearly Conferences (which is also noted in this Newsletter)
2012 SOFT Conference will be held in St. Louis, MO 
July 18-22

$25.00 SOFT Membership includes this wonderful newsletter.
See the SOFT website for membership.

Sunday, May 27, 2012

Is there a better Choice in Carrying to Term a child with Trisomy 13?

Life News Provides our Trisomy Families with HOPE within their up to date articles.
Yes ~ There is a better Choice - with advances in Technology, and Support, Trisomy 13 (Patau Syndrome) Families can move through this unique season of life with their precious child within their loving arms.

Neonatology Professor: Unborn Babies Feel Pain at 20 Weeks

“There is ample biologic, physiologic, hormonal, and behavioral evidence for fetal and neonatal pain,” Prof. Malloy told the committee. “In fact, by 20 weeks post-fertilization (22 weeks by LMP),[i]the fetal brain has the full complement of neurons that are present in adulthood.”
Under later questioning, Prof. Malloy confirmed that the ability of the fetus to feel pain was the “majority view” of those in the field of neonatology.
Perinatal Hospice Provides Critical Care for Unborn, Families

Perinatal hospice families who choose to carry their pregnancies in which the fetus has a lethal condition possess many of the same characteristics of families with a terminally ill adult or child, a clinical scenario in which hospice has been well accepted and a useful method of care.  Many of the hospice principles were successfully applied in perinatal hospice.  The emphasis is on affirming life by care for the loved one, yet regarding dying as a normal part of life.  A conscious effort is made to neither hasten death nor prolong dying.  The team stresses values beyond the mere physical needs of the dying individual and allows the parents to “parent” their child for whatever time they are allowed.  The family is supported in their medical, emotional, and spiritual needs through an organized, multidisciplinary team that cares for them after the death of the loved child during the period of grief.
The care in perinatal hospice differs in emphasis, but not in type of care from other modes of perinatal care.  Its primary focus is on the family — not the fetal diagnosis and attendant anomalies.  The family is placed in the center of the care and there is a continuum of support from the diagnosis, through death, and grief.  As Amy Kuebelbeck, author of Waiting with Gabriel,(21) a book about her own experience with her son who had a fatal form of hypoplastic left heart, notes, “I know that some people assume that continuing a pregnancy with a baby who will die is all for nothing.  But it isn’t all for nothing.  Parents can wait with their baby, protect their baby, and love their baby for as long as that baby is able to live.  They can give that baby a peaceful life – and a peaceful goodbye.  That’s not nothing.  That is a gift.”(22)

LIFE NEWS National State International Bioethics Opinion

Saturday, May 19, 2012

Current - Trending - Breaking Trisomy 13 Information News and Events

Current - Trending - Breaking News - Trisomy 13 Information 

Global News Trending
The children survivors of Trisomy 18 and 13 are increasing

Children with Trisomy 18 managed to survive to older ages. This study result will be a great news for parents of children with Trisomy 18 and 13 because more children are surviving for this disease. Details!!!!!

Trisomy 18 and 13: More children are surviving
Study shows children with disorder are surviving to older ages.
Trisomy 18 is a rare genetic disorder that is considered fatal, but according a new study, there may be hope for the children affected.

Dr. Shawn McCandless, Director of the Center for Human Genetics at University Hospitals Case Medical Center in Cleveland said that the treatment and care of the children with Trisomy 18 and 13 may impact their ability to survive. “We don’t know how well these kids can do until we give them every opportunity to do their very best,” he said. (Danielle Adams –

Friday, May 18, 2012

The SOFT Times (Quarterly Newsletter) just arrived today in the mail. 
(May/June/July 2012)

To Receive yours send $25.00 to SOFT ~ Supporting Trisomy Families 25 PLUS years.
SOFT Membership Information

President’s Message – April 2012

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. Read More on the SOFT website

SOFT Sample Newsletter
Past SOFT Times Newsletter topics

Monday, April 30, 2012

You Tube VIDEO Cracking the Code: Understanding Rare Chromosome Disorders

This is a wonderful video, There is good online internet support in 2012 PLUS Trisomy Families can connect with with eachother on Facebook as well as Yahoo Groups.

This is a very basic video about Chromosome Disorders. It talks about what Chromosomes are, different types of disorders, and basic Q&A for families with a new diagnosis. Questions answered are: What is a geneticist, and what do they do? Why does a child see a geneticist? What should parents do when they receive a confirmed diagnosis? Why bother with genetic testing? 

Are you Looking for the Best and Most Frequented Family Support for Carrying to Term a Trisomy 13 or Trisomy 18 child?
Families who are informed and share how they manage their trisomy baby or child's daily health and medical issues from daily need to  medical intervention and in some cases surgeries.

SOFT USA Support Organization for Trisomy 18, 13 and Related disorders

Saturday, April 28, 2012


Click below to read full article


We have been following a very interesting conversation via the internet.  It is between three people, all of whom we respect a great deal.

It began with an article, written by Monica Rafie and Tracy Winsor, in which they discuss the national Down syndrome organizations', NDSS and NDSC's, stance to remain neutral on the issue of abortion of babies who have Down syndrome. Monica and Tracy had suggested that the national organizations embrace "a simple and confident assertion that abortion is not an appropriate parental response to the prenatal diagnosis of Down syndrome."....

..."In fact, we hope you will read all of the articles. In this respectful dialogue, all three have brought to the table very good thoughts on this issue.  It is a conversation that needs to happen, as we are at a crossroads in this part of advocacy. The new test is looming. Insurance company's are partnering with the corporations that are making the test, while at the same time, the government has a mandate that is in place, ready to roll. We have no other choice, but to discuss this."

Tuesday, April 10, 2012

Inpatient Hospital Care of Children With Trisomy 13 and Trisomy 18 in the United States

Inpatient Hospital Care of Children With Trisomy 13 and Trisomy 18 in the United States

Today women who are pregnant have many things to consider when making prenatal decisions with early noninvasive prenatal tests and newborn screening tests for their precious child. New tests searching out developmental disability and the concern for infant mortality statistics have filled the news in recent years. Women and families have more online options to get well informed within support network groups so they can, and in many cases, making decisions that are best for their babies unique medical condition. Each child can, could and should be treated on a case by case basis, the Treatment varies from child to child and depends on the specific symptoms. - ThereseAnn, Mom to Natalia
.Article from Pediatrics, the Official Journal of the American Academy of Pediatrics

***Concluding statement of 12-year American major national study of interventions on children with trisomy 13 and 18:

"Because we are currently unable to identify which children might be long-term survivors, universal application of the term lethal to the diagnosis of trisomy 13 and 18 is not appropriate."

BACKGROUND AND OBJECTIVE: Trisomy 13 and trisomy 18 are generally considered fatal anomalies, with a majority of infants dying in the first year after birth. The inpatient hospital care that these patients receive has not been adequately described. This study characterized inpatient hospitalizations of children with trisomy 13 and trisomy 18 in the United States, including number and types of procedures performed.

CONCLUSIONS: Children with trisomy 13 and trisomy 18 receive significant inpatient hospital care. Despite the conventional understanding of these syndromes as lethal, a substantial number of children are living longer than 1 year and undergoing medical and surgical procedures as part of their treatment.