June 21, 2024

by Sheryl Crosier, author of I Am Not a Syndrome-My Name is Simon

We’ve all heard of the struggles and hardships of those who became quadriplegics as the result of tragic accidents; or, the successful veteran who became a statistic when he lost his battle to cancer.  But, withholding nutrition and medical care is something that only happens in Chinese orphanages, not in The United States of America (where ALL have the inalienable right to life)…or does it?

My name is Sheryl Crosier, and I witnessed the struggles of my quadriplegic brother, David; and I recall my Marine veteran and successful engineer father feeling like a statistic when his oncologist offered no hope; and I adopted a severely malnourished 4-year-old girl with special needs from an orphanage in China.  But, the most devastating experience of all was the medical discrimination and denial of care experienced by my infant son, Simon, during his 3 months of life, all spent in a United States hospital.

My husband Scott and I have been married for 21 years, and our sons Samuel and Sean were born in 2003 and 2004.  Following the devastation of six miscarriages and genetic testing that revealed a predisposition to miscarry girls, we gave birth to our son Simon, in September 2010.  On his third day of life, Simon was diagnosed with Trisomy 18 (aka Edwards syndrome), and our lives revolved around him and his hospital room.  Family and friends spent many hours cuddling Simon and interacting with him; and, I diligently pumped breast milk to be fed to him through a tube in his nose, because his bilateral cleft lip made it difficult for him to nurse normally.

Boys with SimonAs Simon neared three months of age, we began the process of preparing for surgery to repair his heart.  However, just days before the scheduled pre-surgery consultation, tragedy struck!  On December 3rd, our son’s oxygen levels dropped and we pleaded with medical staff to intervene.  But, to our shock and dismay, no “code blue” resuscitation was engaged, while we were calmly informed that this was the end and nothing could be done. So at 10:45 am, we watched our sweet baby Simon take his last breath, inside a hospital surrounded by unengaged medical experts, whom we had employed to save our son!

It wasn’t until a nurse compassionately informed us that their hands were tied and encouraged us to closely examine Simon’s medical records, that we learned the gut-wrenching truth!  Unbeknownst to us, a doctor had placed a Do Not Resuscitate (DNR) Order on Simon. He; ordered only comfort feeds (which is the least amount of food to sustain life); and , prescribed a medication that expedited his death.  But, the most shocking revelation of all was that ours is not an isolated incident.

However, out of the ashes of our grief we found the joy of adopting our daughter Sabella, from an orphanage in China.  When I was barely pregnant with Simon, God was already preparing for us the daughter we thought we’d never have, as He rescued infant Sabella from the winter elements and placed her in a Chinese orphanage, where she was kept alive with minimal nutrition.  When Sabella joined our family as a 4-year-old, she weighed 23 pounds, and her first meal lasted an hour and a half.  It broke our hearts to imagine the level of deprivation she had experienced in her young life.  Now, Sabella is a happy and thriving 13-year-old, who exemplifies God’s amazing power of restoration!

While Simon (whose name means “to be heard”) taught us the value of unconditional love, Sabella (whose name means “to be consecrated / made holy”) continues to teach us to enjoy each moment.  Consequently, it has become our passion to advocate for the medically vulnerable and adoption of children with special needs.  Thus, the vision of our non-profit organizations is to be a nationwide network of families, guardians, and professionals that advocate for the core missions of Simon’s Law and Simon’s Kids.

So, would any of you want a third party determining the value of your child’s life?  Should it be legal to place a Do Not Resuscitate (DNR) Order on a child; or, withhold medical procedures, medication, food, or water, in an effort to hasten death, without written parental knowledge or consent?

Well, Simon’s Law says “NO!”  And, our mission is to create national awareness and protection for medically endangered pediatric dependents with life- threatening diagnosis through education, accountability, parental rights legislation, and Patients’ Bill of Rights.  Not only have we seen the passage of Simon’s Law legislation in 9 states (Kansas, South Dakota, Arizona, Missouri, Idaho, Arkansas, Iowa, Georgia, and Alabama), but we are also pleased to announce that the Simon Crosier Act will soon be reintroduced in Congress by Congressman Jake LaTurner.

Additionally, the mission of Simon’s Kids is to seek and foster fair and equal access to life saving medical treatment for pediatric dependents with life threatening diagnosis by equipping and empowering parents/legal guardians, through education, advocacy, resources, and national awareness.  Such information and resources include our SimonsLaw.org website and Simon’s Law / Simon’s Kid’s Community Facebook page.  Simon’s complete story is recorded in the books titled I Am Not a Syndrome-My Name is Simon and Hello My Name is Simon, as well as featured in the 2014 award winning documentary on medical discrimination, titled Labeled.

Therefore, I urge you to help us achieve our mission and make your state a Simon state, where NO child is denied parental requested life sustaining treatment for ANY reason!  Because, you never know when an injury or illness will put your own child or grandchild in the same medically vulnerable position as those with birth defects or genetic abnormalities, and you will discover that the medical community does not see his/her value the way you do.

Read Simon’s Story!

Sheryl Crosier was inspired to write the story of her son in I Am Not a Syndrome – My Name is Simon, published by All Star Press.  Order today direct from the publisher or on Amazon in print or Kindle formats.

I Am Not a Syndome

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