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.