by Sheryl Crosier, author of “I Am Not a Syndrome – My Name is Simon” and Simon’s Law Founder
Doctors and hospitals are increasingly making life and death decisions without Informed Consent, and even against expressed wishes of parents.
Anyone of us could end up in a vulnerable situation and be at the mercy of a stranger. An attending physician you met for the first time in a hospital might conclude your life, or life of your child, isn’t worth saving. The question is no longer, “Can we save this patient?” A rapidly trending philosophy amongst those in medicine, is “Yes, we can save the patient, but should we?”
The answer was no for our son, Simon, unbeknownst to us, and despite us making our wishes known that we wanted everything medically done to save our son in 2010.
“We are not here to expedite the demise of our son! Treat him the way you would any other child.” My husband, Scott forcefully, and yet pleaded with doctors to treat our son, Simon. But they had their own countdown for Simon and secretly placed a Do Not Resuscitate (DNR)order in his chart without our consent and gave him medication to suppress his breathing. They also fed him very little, essentially starving him to death. I am so thankful for the compassionate nurse who strongly encouraged us to examine our son’s medical records. No parent should have to fight for their child. That is when we discovered the secret DNR. But we have learned we are not alone.
Sadly, this trend continues to grow. Earlier this year, Baby Wren’s life was on countdown in a Texas hospital. Baby Wren was on a ventilator, and the hospital was counting the days to take her off the ventilator. Hoping to expedite her demise. Texas newborn, baby Wren, was one of the most recent victims of the Texas 25-Day Rule. Under the Texas Law a hospital ethics committee, may decide to withdraw treatment for any reason. A North Texas hospital was ready to cut her precious life short by removing her ventilator, despite her family’s objections.
Tinslee Lewis was another Texas baby whose denial of medical care due to a rare heart condition gained a lot of attention in 2020. Over a year battling the hospital, Tinslee made it home, and still alive five years later. This is proof that the hospital futility policy is a danger to those patients who would otherwise survive if it weren’t for the denial of care. Baby Wren was not so fortunate and did pass away before the 25 days were concluded.
Some speculate she may have been slow-coded. A slow code involves initiating some resuscitative measures but carrying them out slowly or omitting the most aggressive, Interventions in a slow code are limited in number, duration, intensity, or all three. Texas will tell you straight up, the countdown begins. No secret withholding of care. They just do it!
“The term ‘Pro-Life’ goes beyond protecting life in the womb; it also means protecting life until natural death,” said President of Texas Right to Life, Dr. John Seago. “The 25-Day Rule hastens a patient’s death by allowing the removal of life-sustaining treatment, treatment that is needed and working, against the wishes of patients or their families.”
Simon’s case is not isolated to the United States. Sadly, in 2017, Charlie Gard a baby in the UK, was also on the countdown. Ultimately, this hospital expedited Charlie’s demise. Since my son Simon’s death, it has been my mission to make sure life-sustaining treatment is not withheld from minor children without a parents’ consent. Simon’s Law, named after my son, Simon Crosier, says NO it should not be legal to place a DNR in a minor child’s chart without a parent’s knowledge or permission. It’s about informed consent!
Who Decides Your Death Date? That Of Your Child?
Do you as a parent want to make life and death decisions for your child? Or do you want a stranger, which most likely is the doctor you just met in the ICU making the decision that it’s time for your child to go?
Currently, we have 12 Simon-safe states and continue to raise awareness in other states. That is not enough! Those with intellectual disability are particularly at risk for this kind of discrimination. If all children in all states are not protected, then all are at risk!
Will you help us fight for the precious gift of life?
Please do remember our mission in your prayers.
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