Nearly ten years ago, a little boy named Simon Dominic Crosier was born in St. Louis, Missouri. He had two adoring older brothers and overjoyed parents, but despite the love and care of his family, his immediate future was uncertain. Within three days of birth, a genetic test confirmed what Simon’s parents, Scott and Sheryl, had been fearing throughout their pregnancy. Simon was diagnosed with full Trisomy 18, also called Edwards Syndrome.
Although Trisomy 18 is often described within the medical community as “incompatible with life,” nearly 10 percent of children born with the chromosomal abnormality live longer than 12 months. Some live years, like former presidential candidate and U.S. Senator Rick Santorum’s daughter, Bella, who turns 12 this year. Some even make it to their twenties and thirties, and although they experience significant developmental delays, they live meaningful lives full of love and joy.
Simon soon began interacting with his family and his environment. He eventually graduated from taking breastmilk through a syringe to feeding from a bottle and even occasionally breastfeeding from his mom. And one thing obvious to everyone was that Simon loved the skin-on-skin time he would get with his parents while resting on their bare chests in his hospital room.
Like many babies diagnosed with Trisomy 18, Simon was born with serious heart defects. His parents decided to postpone heart surgery until after Simon gained enough strength to survive the procedure and recovery. But his heart soon started failing.
As Simon’s health declined, his parents grew increasingly concerned that he wasn’t receiving the same care as any other baby without Trisomy 18 might receive. “Each day we learned painfully that major medical interventions are routinely withheld from children like Simon,” Sheryl later reflected. “How would the statistics change if these children were treated aggressively?”
Simon breathed his last breath in his daddy’s arms just a few days shy of his three-month birthday. As the life of this little boy ended, his parents were shocked that the medical team didn’t seem to comprehensively monitor and care for Simon.
But Scott and Sheryl weren’t prepared for what they would find in the days after their child’s death. Unbeknownst to his family, Simon’s medical staff had placed a “Do Not Resuscitate” order (DNR) in his medical file.
His parents were outraged. “Care was withheld and a DNR order was placed in our son’s chart, without our knowledge or consent as Simon’s parents,” Sheryl recalled afterwards. “Ultimately, our wishes were ignored and most likely, Simon’s death was expedited.”
In the years since her son’s passing, Sheryl wrote a book, I Am Not a Syndrome: My Name is Simon, to share Simon’s story in hopes of raising awareness about the immeasurable value of children with Trisomy 18 and the unique challenges they face. She’s also waded into the policy world, turning her heartbreaking experience into advocacy for legislation known as “Simon’s Law.”
Simon’s Law requires doctors to obtain parental consent before withdrawing life-sustaining treatment or placing a “Do Not Resuscitate” order in a child’s medical record. It therefore ensures that parents’ rights are protected during critical times when they need to be focused on their child—not worrying about whether their child’s healthcare could be taken out of their hands.
Kansas, South Dakota, Arizona, and Missouri have all enacted Simon’s Laws in recent years. More progress will likely be made this year, as legislators in Idaho, Georgia, Pennsylvania, Ohio, and Michigan have already or will soon introduce Simon’s Law legislation.
Family Policy Alliance® is committed to the principle that children are intimately known and lovingly protected by their parents. That’s why parents must have ultimate decision-making authority over their child’s medical care.
For this reason, Family Policy Alliance worked with allies to pass Simon’s Law in Kansas, and we are now leading the charge for Simon’s Law in Idaho. But our support for parental rights in medical decision-making goes beyond supporting state-level Simon’s Laws. On the federal level, Family Policy Alliance had the opportunity to provide support to U.S. Senator Mike Lee (R-UT) last year while he crafted the Parental Accessibility Rights for Emergency and Negligent Treatment (PARENT) Act.
Introduced in December, the PARENT Act (S. 3138) would require hospitals receiving federal funds to inform parents of their end-of-life policies regarding minors upon request. If enacted, the law would help prevent parents like the Crosiers from being blindsided by hospitals removing life-sustaining treatment from their child without parental notice or consent.
Children are a gift from God to parents, and He has given parents the right and the duty to make medical decisions for their children, especially in times of crisis. Simon’s Law and the PARENT Act safeguard this important right, and both represent an important step toward a nation where God is honored and life is cherished.
Since it is vital that parents aren’t shut out of life-and-death medical decisions when it comes to their children, we are asking you to do two things:
- Use our Action Center to ask your two U.S. senators to cosponsor and support the PARENT Act (S. 3138) and other federal legislation protecting the rights of parents to make medical decisions for their children. We’ve made it easy for you—and it only takes a minute.
- Pray for the passage of Simon’s Laws in Idaho, Georgia, and many other states considering the legislation this year. God hears our prayers!
This post was originally written for Family Policy Alliance.