Tabitha’s Story and “Simon’s Law” in Idaho

Tabitha 16 months
Tabitha Grace

I have good news for you: Simon’s Law (now House Bill 578) was passed by the Idaho House of Representatives last week with a 63 to 5 vote.

Idaho law currently allows doctors to withdraw life-sustaining treatment, including nutrition and hydration, from a minor child without notifying or obtaining consent from parents.

Simon’s Law would close this loophole, ensuring that parents’ rights are protected during these critical times. No parent should have to worry that decisions about their child’s healthcare could be taken out of their hands.

Through working on this legislation, I have gotten to know Sandi Enzminger of Eagle, Idaho. She has showed up to every committee hearing, bringing her delightful family in tow. Her youngest daughter, Tabitha Grace, is always the star of the show—and for good reason.

Little Tabitha was born October 28, 2018. Shortly thereafter, her parents received a postnatal Trisomy 18 diagnosis.

Tabitha in Senate Gallery
Tabitha and her brother sitting in the House Gallery watching debate on Simon’s Law

They were stunned to hear the doctor explain that Tabitha, despite being stable, wouldn’t live a month. The potential benefits of the heart surgery she needed weren’t worth the risks, the doctor said. Adam and Sandi were told to take Tabitha home on comfort care and allow the disability and its associated health difficulties take their course.

Thankfully, Adam and Sandi fought for their daughter. They were able to take her to a hospital in Omaha, Nebraska, for heart surgery she couldn’t live without. Now Tabitha is a healthy and developing sixteen-month-old.

Here is what Sandi says about the importance of Simon’s Law to her family:

Shortly after Tabitha was born, we were informed that she likely had Trisomy 18. We understood then that her disabilities would be so severe that it was advisable to “let her die” of “natural” causes. Then, when we pursued heart repair surgery, we were told it was futile and would have little to no effect on the length or quality of her life.

Today, her heart and lungs are functioning normally without assistance. Her hearing is enhanced by hearing-aids, and she has the energy to progress in developmental milestones.

Although this journey has not been easy, time with Tabitha has been worth it. We strongly support Simon’s Law because we felt coerced into making life-ending decisions. We believe that it is only a matter of time before medical discrimination leads to secret “DNRs” for minor children here in Idaho.

When I asked Sandi why she fought so hard for her daughter, she responded, “We value life, and we trusted God to be bigger than any diagnosis.” Needless to say, it has been a blessing to have Sandi, Tabitha, and their family join us for committee hearings in support of Simon’s Law.

Parents should hold the ultimate medical decision-making authority for their children. Before a doctor begins withdrawing life-sustaining treatment, parents should be notified and given the opportunity to transfer their child to another medical provider, just like Sandi Enzminger was able to do for Tabitha.


This post was originally written for Family Policy Alliance of Idaho.


 

“Simon’s Law” in Idaho Will Protect Children and Parents’ Rights

SimonsLawSimon Dominic Crosier was born almost ten years ago. Although he lived only a short three months, his story is inspiring lawmakers around the country to pass legislation protecting the rights of parents to make medical decisions for their children—and Idaho may be the next state to pass one of these “Simon’s Laws” named in his honor.

It wasn’t long after Simon’s birth and postnatal Trisomy 18 diagnosis that his parents, Scott and Sheryl Crosier, began noticing that their son wasn’t receiving the same medical care as other children without the chromosomal disorder were getting. Simon had been born with a heart defect (which is common among Trisomy 18 children) and would need constant care from his hospital medical team until he became strong enough to undergo heart surgery.

Like most newborns, Simon loved snuggling into his parents’ chests. He would get especially excited when his older brothers came to visit him in the hospital or when music was played for him.

Yet when the dreaded day came that his oxygen levels began dropping, Scott and Sheryl were surprised the doctors and nurses didn’t do more to save their child. It was only after his death that it became clear the doctors had placed a do not resuscitate order in his file and had been withholding nutrition from him, all without notifying his parents.

After hearing Simon’s story, Rep. John Vander Woude (R-Nampa) introduced House Bill 519, legislation meant to make sure what happened to the Crosier family will never happen to a family in the Gem State.

The Idaho Simon’s Law would protect parental rights during critical times when parents need to be focused on their child—not worrying about whether their child’s healthcare could be taken out of their hands. This would be accomplished through:

  • Requiring parental notification before a doctor implements do not resuscitate orders or withholds life-sustaining treatment, nutrition, or hydration;
  • Granting parents a 48-hour period to decide whether they want to transfer care for their child to another facility or provider;
  • Allowing the family 15 days to make that transfer, during which time the “DNR” order cannot be placed in the child’s file and other treatment cannot be withdrawn.

We believe that children are intimately known and lovingly protected by their parents. It is well-established in Idaho law that parents have the fundamental right to direct the care, upbringing, and education of their children—and Simon’s Law would build on that foundation.


This post was originally written for Family Policy Alliance of Idaho.


 

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.