Letter to Physicians: 

Patients Plan of Care - Faith in Action

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,