The Story Behind Simon’s Law and Parental Rights Over DNRs

By Sheryl Crosier

On September 7, 2010, God blessed us with a precious son, Simon. Even with a bilateral cleft lip and weighing only 4 pounds, 3 ounces, he was truly our gift from God.

On Simon’s third day of life, he was diagnosed with Trisomy 18, also known as Edward’s syndrome. For too long, this condition has been considered a “lethal” anomaly and “incompatible with life” despite evidence of individuals with Edward’s syndrome surviving for not only months and years, but even decades.

After that clinical diagnosis, Simon’s care and treatment began to be withheld, but the extent of the hospital’s denial of care would not be known until much later.

Simon remained in the hospital and our lives revolved around him. Our family and friends spent many hours cuddling Simon and interacting with him.

As Simon neared three months of age, we looked forward to surgery to repair his heart. Tragedy struck just days before the scheduled pre-surgery consult. On December 3, our son’s oxygen levels began to fall. Shockingly, we were told, “This is the end. Nothing can be done.” Imagine watching your child take his last breaths inside a hospital where he has been a patient for months and no “code blue” resuscitation is engaged!

I pleaded with the medical staff again and again, yet was told, “NOTHING can be done.” That morning at 10:45, our sweet baby, Simon, died.

Our sorrow was unimaginable. My agony was soon compounded when the other hospital called to confirm our upcoming consult appointment and I had to tell them that my son was dead.

THE HORRIBLE TRUTH

After Simon’s death, we found out the horrible truth: there was a do-not-resuscitate (DNR) instruction in his medical file. This explains why the staff stood around and did nothing. If Simon had been a typical three-months-old, NICU staffers would have been hustling to save him. Because he was a child with one extra chromosome, no one did a thing.

We also discovered–too late–that Simon had only been getting comfort feeds, an insufficient amount of food for growth and development. Simon was being intentionally starved! As an example of that food denial, my husband Scott relayed that he had once been awakened at 4:40 a.m. by a nurse practitioner at the hospital when Simon was fussing and clearly irritated. She firmly asked, “Do you want me to give him morphine?” Scott knew instinctively that giving a powerful narcotic to a tiny infant with severe heart problems was a bad, if not fatal, idea, so he adamantly refused her recommendation. In hindsight, Simon was likely fussy because he was very hungry from being denied sufficient nutrition in the “comfort” feed! Scott gently took Simon in his strong arms and rested him on his chest and our son calmed downed immediately.

In spite of the fact that Scott had refused the administration of morphine, on Simon’s last day of life he was given a drug which was contraindicated for his apnea, suppressed his respiratory drive, and expedited his death. How would you feel if you discovered your child was given a drug that caused adverse effects to the point of death? Simon’s human rights were violated, as he was a victim of genetic discrimination, and our parental rights were completely taken away.

Medical “experts” decided our son’s life didn’t have value and took a variety of actions to effectuate his demise.

If you have not yet seen it, I encourage you to see the independent documentary film “Labeled.” The film interviews many families across the USA who fought for their medically-challenged children to be treated appropriately. It is gut-wrenching to learn it is legal–and common–for a physician to withhold care and place a DNR in a child’s chart without parental knowledge or consent. It doesn’t matter if the child is one day old or 17 years old, any doctor can unilaterally issue a DNR order to a minor.

Should it be legal to withhold procedures, medications, food and/or water to hasten the death of a child without parental consent? Should it be legal to place a DNR in a child’s medical chart without parental consent? Simon’s Law says, “NO!”

GOD BLESSED US WITH A SON, NOT A SYNDROME

I can’t bring my son, Simon, back, but I want to make sure this doesn’t happen to another child, your child or any of my other children. In my opinion, no one loves their child more than their parents. I believe a parent should have the right to make medical decisions for their child.

God did not bless us with a syndrome. He blessed us with a son–Simon. His story will continue to change hearts. I will continue to increase awareness of patient discrimination and help to empower parents to make sure their children are getting the care they deserve.

Unfortunately, Simon was not an isolated incident. Both Scott and I are Chapter Chairs for SOFT (Support Organization for Trisomy). We heard from many families that (1) they will not EVER leave their child alone in a hospital and (2) they monitor medical staff activity with the utmost caution. Scott and I also maintained a vigil at Simon’s side and the few times we went out for a dinner “date night,” Grandma Lois stayed with Simon in his hospital room.

If ALL children aren’t protected, then ALL are at risk! It could be your child or grandchild next. The need for parental permission for DNR orders also extends to children without special needs who have experienced life-threatening accidents or disease.

WE MUST PROTECT ALL CHILDREN, IN EVERY STATE, FROM MEDICAL DISCRIMINATION

All states need to imitate Kansas and pass Simon’s Law, which was enacted in April 2017 and is in effect. The law (1) empowers parents to reject DNR orders for their children and, more broadly, (2) enables any interested party to discover which medical facilities have written “futility” polices that dictate when life-saving care will be withheld.

Karye Perez manages Simon’s Law pages on social media and is now coordinating Simon’s Law nationwide, connecting with families, physicians, pro-life organizations, disability groups and legislatures. Perez is a medical professional, mother of two children with special needs, and former advocate for Charlie Gard. Perez shares her findings about United States hospitals in a recent Bioethics Report interview with Bobby Schindler, President of Terri Schiavo Life and Hope Network:

I called quite a few hospitals. I was grilling them and asking them do they have these futility policies and I was really getting the run around. I was told, “No, we really don’t have that. We have an ethics committee that is really patient-oriented.” It was constant denial from the facilities with my messages often pawned off on someone else. Nobody would ever give me a clear answer and certainly would not forward any written policies on denial of care.

SIMON’S LEGACY

As for the Crosier family, our grief will never disappear until we hold our little warrior, Simon, again. Simon was, in effect, trying to reach Mount Everest with very little, if any, medical assistance. To memorialize his travails, we have written two books.

My longing to commemorate our journey resulted in a self-published book, I Am Not a Syndrome–My Name is Simon. I believe my son provided the title of his first book because our children are not labels and are not defects. No person is disposable and every person has a name and an identity.

Simon’s second book, as told by Samuel and Sean, Simon’s big brothers, is titled Hello, My Name is Simon.It explains their journey and the unconditional love they had for their baby brother. While it is a common saying that children are resilient, the death of a sibling is truly heartbreaking and life changing.

Sean testified to the Kansas Senate in support of passage of Simon’s Law:

Hello, my name is Sean Crosier, one of Simon’s big brothers. I always REALLY wanted to be a big brother. I was young when Simon was born, age 5 to be exact. But my age did not take away any of the hurt of losing him. Looking back, my parents tried to protect me and my older brother, Samuel. But, to this day I still want to know why the doctors did not do what doctors are supposed to do. I loved Simon so much and when he arrived I was finally a big brother. When I think about it, I know they could have done more and truly wish they had. My parents eventually fulfilled my wish and adopted my little sister from China. I am now the big brother of Simon and Sabella.

Simon’s legacy lives on. As a family, we will continue making memories in memory of Simon. If it wasn’t for Simon, we likely wouldn’t have adopted our daughter Sabella. We believe Sabella was “Simon sent.”

Please protect our children and parental rights. Please stop the practice of issuing secret DNR’s. If all children aren’t protected, then all are at risk.

The name Simon means, “To be heard.” Let Simon’s message be heard! Make your state a Simon State.