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,