Nearly ten years ago, a little boy named Simon Dominic Crosier was born. 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!
Standing for families,
Director of Advocacy
Family Policy Alliance of Idaho
By Stephanie Curry, Esq., policy manager for Family Policy Alliance
Alfie Evans is only 23 months old, but he has been on life support in a UK hospital for nearly half of his young life because of a degenerative brain disease. The doctors at the UK hospital determined baby Alfie is in a vegetative state and that it is in his “best interests” to have his life support removed.
Katie and Tom are fighting desperately for their child’s life in the UK Court system to stop the hospital from removing Alfie’s life support. Alfie’s parents have lost appeal after appeal to prohibit the hospital from making a choice that should only belong to the parents. Sadly, the UK Court of Appeals agreed that keeping Alfie alive was “inhumane”. The UK Supreme Court ruled that Alfie’s life support would be “futile.” And, ironically, even the European Court of Human Rights sees nothing wrong with these decisions and rejected Alfie’s case.
This case may remind you of baby Charlie Gard, whose parents also unsuccessfully fought a UK hospital last summer to give their child a chance at life through experimental treatment. It also may remind you of Simon Crosier, who was born here in the United States. Missouri hospitals made the same decision, that Simon’s condition was futile, and he was denied life-sustaining treatment when doctors placed a do-not-resuscitate order on his file without even notifying his parents.
Alfie’s Dad, Tom Evans has described the pain his family is facing –Little Alfie is “about to be murdered.” Who can blame this father’s heart? Tom and Katie have a fierce desire to protect their child’s life. The heart of a parent fills with hope and love for their child that can only belong to parents. A love that doesn’t belong to doctors, or hospitals, or governments.
Family Policy Alliance and our state allies, along with likeminded legislators, determined that parents should never have to go through what Charlie’s, Simon’s, and now Alfie’s parents have faced.
Family Policy Alliance of Kansas supported passing Simon’s Law, the first in the nation, that gives parents ultimate authority over whether or not a hospital can remove life-sustaining treatment from a child.
Simon’s Law legislation was also introduced in Georgia by Senator Chuck Payne, a legislator who was trained at Family Policy Foundation’s Statesmen Academy last year. Unfortunately, Simon’s Law legislation did not pass in Georgia this session. Elected leaders in Georgia thought Simon’s Law was too controversial for a vote.
This is a powerful reminder of why we need elected leaders who are willing to protect life and parental rights. The purpose of the Statesmen Academy is to train elected leaders to hold fast to their faith and principles in public office and to advance the values—like life and parental rights—that we care about through the laws they pass. Senator Chuck Payne advances these values in his position, but he can’t do it alone.
We still have a chance in America to fight for the right of parents to parent. Simon’s Law will be coming up again in Georgia next session, and other states. As elections draw nearer, be looking for candidates who cherish life and believe parents are in the best position to love and protect their children!
And, if you’d like to support the Statesmen Academy, a generous Christian family has provided a matching grant for this June’s Statesmen Academy, so every dollar given now will be matched—up to $80,000!
by Stephanie Curry
Recently, two families burst into the international spotlight because the law did not defend the parents’ ultimate rights to protect the very lives of their children.
The first story centers around infant Charlie Gard, who was born with a fatal genetic disorder in London. The hospital treating Charlie refused to allow his parents to move him to the U.S. to seek pioneering medical treatment. The hospital aggressively argued it would be inhumane to keep Charlie alive because of his condition, and life-sustaining treatment was withheld despite his parents’ desperate battle in court. Charlie died at 11 months old, after his ventilator was removed by medical workers.
The second story involves Simon Crosier, who was born in Missouri with a genetic condition. Like Charlie, treatment for Simon’s disorder was considered by doctors to be “futile,” and he was not expected to live long. At three months, he struggled to breathe. His oxygen levels plummeted. Yet, no one rushed to his aid. Hospital staff remained eerily quiet and distant as Simon’s parents watched him die. Simon’s doctors, without his parents’ knowledge or consent, had placed a “do not resuscitate” order into his file. The Crosiers were stunned when they discovered that doctors could secretly decide their son’s life was not theirs to protect. Since that time, the Crosiers have worked diligently to pass laws that will give parents the legal right to make the final decision regarding life-sustaining treatment for their child.
In fact, Family Policy Alliance of Kansas worked with allies in that state to pass the very first “Simon’s Law” earlier this year. It will protect babies like Simon.
Family Policy Alliance and our state allies will be working hard in 2018 to ensure children can be lovingly protected by their parents through “Simon’s Law” legislation. If Charlie’s parents or Simon’s parents had had the benefit of such laws, they would have had the final word on their child’s life-giving medical care – not hospitals.
We believe children are given by God to, intimately known by, and lovingly protected by their parents — first and foremost. That means it is the parents’ God-given responsibility to protect and preserve the lives of their children. Thank you for continuing to partner with us as we fight to let parents parent across the country.
This is part 2 of 5 in our Let Parents Parent series on the importance of protecting parental rights for families.
Part 5 Education Choice for Families and a Wide-Open Future for Their Kids
Facebook: Charlie Gard #CharliesFight
Family Policy Alliance is proud to work alongside Eric Teetsel & Family Policy Alliance of Kansas, one of our 40 state-based allies.
Last night, my wife and I fought a battle. It was an hours-long struggle of sweat and tears that left us bruised and exhausted, but we endured and won, eventually.
Our two-year-old went to sleep.
You know what? When she awoke a few (short) hours later, bright-eyed and asking for eggs, we still loved her.
This is a familiar story experienced by millions of parents for thousands of years. There exists a bond between parents and their children that defies logic and rationale. Children are expensive, exhausting, and emotionally draining. Why do this to ourselves?
Because it’s a Holy calling.
When God created the world, He made man and woman and gave them two jobs: cultivate the Earth and fill it with children. In God’s plan, man and woman come together as husband and wife to fulfill their calling to create new life, their children.
In His perfect plan, God takes this mandate and turns it into a blessing:
Behold, children are a heritage from the Lord,
the fruit of the womb a reward.
Like arrows in the hand of a warrior
are the children of one’s youth.
Blessed is the man
who fills his quiver with them!
He shall not be put to shame
when he speaks with his enemies in the gate. (Psalm 127:3-5)
The precious relationship between children and their parents is also enshrined in the fifth commandment: “Honor your father and your mother, that your days may be long in the land that the Lord your God is giving you,” (Exodus 20:12).
In our time, as societies choose to move further and further from God’s plan, respect for the relationship between parents and children is diminishing. The latest example comes from the United Kingdom, where baby Charlie Gard has been condemned to die by the government.
Charlie’s parents know that he is worth fighting for – and so does Family Policy Alliance. Stories like this are a reason we fought to pass Simon’s Law in Kansas, legislation which gives parents alone the right to make decisions about their children’s medical care in emergency situations.
The fight to preserve parental rights is not limited to health care. Family Policy Alliance is advocating across a range of public policy issues, including the right to determine a child’s education, preserving family structure in child welfare cases, and more.
Thank you for standing with us.
Will you take time to do two things this week?
First, pray for Charlie Gard and his parents, Chris and Connie.
Second, Kansas—and every state in our nation—needs families like yours willing to be salt and light, boldly standing up for God’s design for parents and families. Will you tell your friends about the Family Policy Alliance policy ally in your state, perhaps by sharing our Facebook page with them or forwarding this email and having them subscribe to receive it?
Social media and our email updates are the best ways we can communicate with you quickly when policies that impact parental rights in your state come up.
P.S. In Kansas, we were able to pass Simon’s Law, protecting parent’s rights over children’s medical care in emergency situations, because families partnered with us and insisted that this was right. Please make sure we’re connected with you in your state—and with your loved ones who care about God’s design for families.
Gov. Sam Brownback has signed 18 pro-life bills covering a broad range of issues that all go toward protecting pre-born babies.
Paul Weber, president of Family Policy Alliance, asks him how to stand strong in the face of adversarial courts.
Learn more about the Family Policy Alliance of Kansas.