The Gregory-Arritola Family

Letters to Physicians and the Community

Letter to Physicians: Trisomy 13 Survival Tactics Our son Anthony Emmanuel Arritola lived a life that felt as if it was an entire uphill battle for the right to receive medical care in a county that gives us a “right to life”.  Contrary to that statement, the pressure to terminate or end his life before his birth was more of a “culture of death” or “best for all involved” theory than a “right to life”. Because of our efforts to communicate our right to bring our child to life, I feel it necessary to give a model of how a child can be supported without the frustrations the medical community feels in providing services to a child diagnosed with Incompatibility with Life or Failure to Thrive.    If our child were over 18 years, he'd have an advanced directive, but since he is a minor, he has us, his parents, to communicate the directives for his healthcare to his specialists involved in creating a plan of care.  Sometimes, it felt to us the medical community felt as if they had a full right to design his care and plan despite our right to parent our child within our faith values.    During his life, his plan of care focused on sustaining his comfort & providing treatments towards living as normal a life as possible given his medical diagnosis.  As we reached end of life issues, our directives for our Trisomy 13 son were outlined to our physicians as follows:  "We want Anthony to be kept clean, free from infection and free from pain as much as necessary and to be given nutrition and hydration even if through a tube ... to ensure he lives a dignified life".  In our effort to communicate these simple directives (day after day), we felt drained as if communication was an uphill battle.  Each day the physicians, nurses and technicians went home and got rest.  We stayed by our son 24/7 at home or where ever and yet, the next day we were faced with your same questions regarding basic support as if our answers to support our child had changed.  Nutrition and hydration, was not an option for us to stop as it was against our beliefs.    In our situation, we relied on the basics of bio-ethics in conformity with the Hippocratic Oath and our Christian faith as outlined on the Resourceful links page of our website.   We further stated that we understood additional medications above nutrition and hydration (the seizure meds and heart meds) were not a hardened requirement for us ... (even by our faith) but they were to be administered for comfort measures.  Anthony deserved to live a comfortable life, free from pain and unnecessary suffering.  We understood we had the option to take away these medicines in the future if we chose to do so.  We stated to each of our specialists (several visits per day) we understood this but the re-asking day after day was emotionally draining for us as if an uphill battle.  We wanted the questions to stop and we wanted to be understood so we could focus on being more upbeat for Anthony each day.    We had to repeat our directives for Anthony’s healthcare several times before we finally communicated in proper language that Anthony would not die from starvation, by our negligent action or by our decision to end his treatments.     When did it become so emotionally draining and hard to give life a chance?  As a child physician, you impact more than just the child's health; you impact the family support mechanism.  I beg you to support the parents’ efforts to sustain comfort care & treatments towards living as normal a life as possible (given the diagnosis) and to realize parents are living an uphill battle.     In short, parents of Trisomy 13 children are looking for physicians who understand the right to life and will coordinate the patients’ plan of care with other specialists and document issues for insurance and other administrative support agencies.  Documentation for a Trisomy 13 child is crucial for downstream support services in insurance benefits, therapies and educational requirements.       We simply need support for children in these situations, as well as compassion to underlying spiritual beliefs.  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

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

Letter to Physicians:  Considerations in making a specified Plan of Care ·        Right to Life and Right to Die with Christian Dignity   Although there are many denominations of Christianity, there are several fundamental values intrinsic to all Christians.  Unfortunately, some parents may not be able to communicate inherit Christian beliefs during a time of distress and to others, they may be still learning what it means to live out their faith (faith in action is a learning process).    If you are a physician or a person working with a Christian family and do not understand the families Christian beliefs, ask them to tell you about them.  Beyond understanding their belief system, each citizen of the United States has the right to communicate directives for their child's care within their rights as parents and their rights to practice religion freedoms.    In relation to those who are sick, handicapped or disabled, the Christian beliefs are promulgated in the Catholic Catechism 2276-2279, and further elaborated on in the Declaration on Euthanasia (1980), Prepared by the Sacred Congregation for the Doctrine of the Faith.  I encourage all healthcare workers look into these sources (as links to these sites have been provided for your convenience).  Further information is available for you to peruse in The Charter For Health Care Workers written by the Pontifical Council for Pastoral Assistance to Health Care Workers in Vatican City - 1995.    All children must be given the means requisite for its normal development, both materially and spiritually under the first right of the Rights of a Child according to the Geneva Declaration endorsed by the League of Nations and further expanded by the General Assembly of the United Nations.    With my child's Trisomy 13 diagnosis, the medical literature did not show favorable survivability statistics.  I ask you to look beyond the Failure to Thrive issues and treat my child as sick child who needs constant and chronic care.  For that, we will need the physician’s documentation for specified care.    Christian parents are seeking a community of persons to be supportive of special needs children as well as compassionate to underlying spiritual beliefs.  If you are a physician, therapist, educator or other community member called to put into practice these beliefs, feel free to offer your support services to these families.  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