If you haven’t heard of Simon’s Law, it’s time you do. The Kansas legislature knows it as Senate Bill 85, but even calling it by this technical name goes against the heart of the bill. You see, at the heart of this bill is the story of a little boy named Simon who left his parents and this earth at just 3 months of age.
Simon Crosier was born September of 2010 with a rare chromosomal syndrome known as Trisomy 18. Few children with Trisomy 18 survive their first year of life. In Simon’s mother’s book, I Am Not a Syndrome—My Name is Simon, Sheryl Crosier describes how life-sustaining care was withheld from her son, leading to his death in December of 2010. The injustice of his death lies in this fact: life-saving care was withheld from their without the parents’ consent. Due to Simon’s Trisomy 18, a Do Not Resuscitate order (DNR) was placed in Simon’s medical file without his parents’ knowledge or authorization.
Since the tragic loss of their son, the Crosiers have been on a mission to ensure children like Simon are not discriminated against because of their medical conditions. Simply stated, Simon’s Law would make it so no healthcare professional could withhold or restrict life-sustaining measures or authorize a DNR on a minor without a parent’s permission.
As a craniofacial surgeon, I have seen first-hand some of the most difficult situations a parent and their child can ever face. When I care for a patient who is unlikely to long survive, I am obligated to provide the best medical care and communicate realistically with parents.
Throughout my 23 years of practicing medicine, I have had to consider each situation independently. Each patient is a person, not a series of numbers and statistics. There have been times in my career when predictors indicated a certain outcome, yet the person’s strength and ability beat the odds, allowing them to survive and thrive. It is my job to tell parents the facts and the odds and give them my opinion because they count on my education and experience to help them decide what choices to make. It is not my role to decide a patient is not worth treating because the odds are against them. In the end, as a doctor, I must respect that parents are best fit to make life and death decisions for their own children.
While this legislation sounds like common sense and should be easily approved, rarely is the legislative process simple. In the years to come, history will judge our society by how we treated the most vulnerable among us. Let us take a stand and protect children like Simon. Ask your legislators to vote yes on Senate Bill 85, then tell them Simon’s story. Let us make sure his story is not repeated.