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

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

A new book ~ What Every Woman Needs to Know About Prenatal Testing

Amy Julia Becker Thin Places Faith, Family and Disability - opens the discussion regarding her new book, share your experience and or thoughts to help her cover all the unique situations women find themselves in... Thank you for your input.

My Next Book? What Every Woman Needs to Know About Prenatal Testing

Many of the comments already offered are interesting...

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 - Trends in Healthcare, Professional Viewpoint, What does "rare" disorder mean? and Publications

SOFT USA - has added Page Updates
Please go check out all the articles and information they are adding to the website pages.

• Trends in Healthcare
• Professional Viewpoint
• What does "rare" disorder mean?
• SOFT Publications

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

The Ultimate Trisomy Information Center for Trisomy 18, 13 and Related Disorders

SOFT USA - The Largest Global Trisomy Network of Support 
Supporting Families for 25 Plus years with Trisomy Related Syndromes 

Pam’s Papers:  Research and Commentary Papers about Children with Trisomy Disorders, written by SOFT Member Pamela Healey, PhD. http://www.trisomy.org/resources/pams-papers

What Should We Do Now? Necessary Information After a Diagnosis of Trisomy 18 or Trisomy 13  

The Medical Intervention Debate   

The Culture of SOFT 

and more.....

International SOFT Support Sites
America USA
Australia
Canada
England
Germany
Ireland
Italy
Japan
New Zealand
Romania
Scotland

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

The SOFT Times (Quarterly Newsletter) just arrived today in the mail.

I highly suggests you join this wonderful Global Support Network. 
To Receive yours send $25.00 to SOFT ~ Supporting Trisomy Families 25 PLUS years.
SOFT Membership Information


The SOFT Times - A newsletter for families with children who have chromosome disordersThe 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

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