Protecting Parental Rights in Medical Decision-making

SimonAndDad
Simon and his daddy, Scott

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:

  1. 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.
  2. 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.


 

Abortion Pill Reversal Saves Lives—And Women Have A Right To Know About It

CaptureAndrea was scared—just like many other young women in her position.

The third-year nursing student and college cheerleader had found out just days before that she was unexpectedly pregnant, and now, in the abortion clinic with her boyfriend, she was facing pressure from doctors and nurses. They were telling her that she was “doing the right thing” by getting an abortion. After all, as the doctor said, “It’s not the right time” to have this baby—and her boyfriend agreed.

Andrea knew she had reservations about what she was doing. In the days leading up to her trip to the abortion clinic, her mom had been begging her to reconsider her decision. This morning, Andrea had barely been able to keep back her tears in the waiting room while waiting for the clinic nurse to call her name.

When the doctor handed her the first of two abortion pills—an increasingly common method of abortion, called chemical abortion, performed during the first trimester of pregnancy—Andrea says she “froze.” The doctor, seeing her hesitation, said abruptly, “Now hurry up and take that pill before it melts in your hand, it’s very expensive.”

Suppressing that screaming inner voice telling her not to do it, Andrea swallowed the pill, then, wishing she hadn’t, tried to throw it up. The doctor reminded her to take the second abortion pill 24 hours later.

When she left the clinic, Andrea says she ran “straight for the car where I fell to the ground crying and screaming for God to forgive me.” She knew she had to “fix” her “mistake,” so she called her mom, who took her to hospitals and doctors, hoping someone could offer a way to reverse the chemical abortion already in progress. Their search turned up empty, so Andrea, devastated, called her aunt to pray that God would save her baby despite her bad decision, and then went to bed.

When Andrea awoke the next morning, she stumbled upon an article about a doctor who had successfully reversed a chemical abortion. She immediately called a phone number, operated by Abortion Pill Rescue, a coalition of prolife OBGYNs who offer what is called “abortion pill reversal.” The compassionate voice that answered the phone put Andrea in touch with a local doctor, who told her to rush to the doctor’s office.

The doctor confirmed the baby’s heartbeat and immediately began the reversal procedure, which involves progesterone injections that can reverse the chemical abortion, stabilizing the pregnancy and allowing for a healthy baby.

Just like Andrea, many women enter abortion clinics unsure about the decision they’re making. These women immediately regret taking the first dosage of medication to end their pregnancy, yet they often don’t know where to turn or what options they have available to reverse what could be the worst decision of their lives.

Knowing this, North Dakota Rep. Daniel Johnston and other state legislators, with the help of Family Policy Alliance of North Dakota®, led a successful effort earlier this year to enact a state law requiring that women who receive chemical abortions be informed that it may be possible to reverse the effects of the medicine if they change their minds.

Unfortunately, pro-abortion activists are suing the state to overturn the North Dakota informed consent provision that empowers women like Andrea with the knowledge to make an informed decision about their chemical abortion. To make matters worse, a judge recently blocked the enforcement of the law.

As the director of advocacy for Family Policy Alliance of Idaho®, I’ve seen something comparable to what is taking place in North Dakota also play out in my state.

The Idaho legislature, with the help of Family Policy Alliance of Idaho and other pro-life organizations, passed a similar informed consent bill in 2018 that also faced legal challenges in the courts. Our informed consent law survived the court challenges, an outcome that should give hope to our friends in the Peace Garden State.

Informed consent for chemical abortion is supported by the American Association of Pro-Life Obstetricians and Gynecologists, which boasts a membership of over 2,500 medical professionals.

And these laws seem to be effective. Although it’s a relatively new medical practice, abortion pill reversal protocol has saved the lives of 750 babies so far, according to Heartbeat International. Sadly, too many mothers living in states without these informed consent laws don’t find out there’s a way to reverse their chemical abortion until it’s too late.

Remember Andrea, the cheerleader and nursing student? She gave birth to Gabriel, a perfectly healthy, beautiful baby boy. “I thank God and I thank my doctor, an angel sent from above to save precious little lives, and to save the lives of mothers, because without her, I don’t know where I would be today,” Andrea also wrote in an online testimony. Family Policy Alliance® talked to her in this video after Gabriel was born.

Please keep praying that the North Dakota informed consent provision survives its legal challenges in the courts. Laws like these are medically sound and legally defensible, furthering a compelling state interest to ensure women are adequately informed before undergoing medical procedures. But perhaps most importantly, these laws really do save lives—and save mothers from a lifetime of regret.


This article was written for Family Policy Alliance.