On September 7, 2010, Simon was born. Even with a bilateral cleft lip[1] and weighing only 4 pounds, 3 ounces, he was a perfect gift from God. But on Simon’s third day after birth, it became apparent that he was struggling with some medical complications. He was ultimately diagnosed with Trisomy 18,[2] also known as Edward’s syndrome.

 

For too long, Trisomy 18 has been considered a “lethal” condition and "incompatible with life" despite evidence of individuals with Edward's syndrome surviving for not only months and years but even decades. With that in mind, Simon's parents were determined to spend all the time and effort necessary to fight for him and ensure he lived as long and fulfilling a life as possible.

 

Trisomy 18 children often require heart surgery early on,[3] and his parents were scheduled to meet with a cardiac surgeon on December 6th. So, Simon remained in the hospital and his parents’ lives revolved around him. Family and friends spent many hours cuddling Simon and interacting with him. It was known that the road would be long, but his parents were committed.

 

Tragedy struck just days before the scheduled pre-surgery consult. On December 3, Simon’s oxygen levels were falling, and things looked grim. Shockingly, the parents were told by the medical staff, “This is the end. Nothing can be done.” Both mother and father watched in disbelief as their child took his last breaths inside a hospital where he had been a patient for months, surrounded by talented doctors and nurses, yet no “code blue” resuscitation was ordered or engaged.

 

Both pleaded with the medical staff again and again, yet were told, “NOTHING can be done.”  They were losing Simon, but there was no help. No carts, no beeping monitors. They were the only people panicking. But sadly again, absolutely nothing was done. That morning at 10:45 AM, sweet baby Simon died.

 

His parents’ sorrow was unimaginable. The nurses told both of them their hands had been tied due to reasons they could not say, but they were given indications that Simon’s medical chart should be more closely examined. There a horrible truth was found: a do not resuscitate (DNR) order[4] had been placed in Simon’s medical file. Something they had no knowledge of and certainly had not given their consent to. This explained why the staff stood around and did nothing. Unknown to them, someone decided their son’s life had no value. Without their knowledge or consent, someone decided to order a DNR to finalize Simon’s life and deny even the chance of the life his parents imagined for him.

 

It is horrifying to learn that a physician can legally and unilaterally place a DNR in a minor child’s chart without parental knowledge or consent. Simon’s mother has made it her mission to bring her son’s story around the nation and fight to change state laws that would allow nightmares like this to happen again.

 

In 2017, Kansas became the first state to sign Simon’s Law. Two years later, Missouri followed suit. Now, Georgia is answering the call to sign Simon’s Law into effect in our state. Simon cannot be brought back. No parent or guardian of a minor child should be stripped of their parental rights in the determination of their child’s life or death. That’s why Georgia Life Alliance (GLA) is leading the fight to bring Simon’s Law to our state. HB 212,[5] which just passed out of the House Judiciary Committee, will prohibit a DNR from being placed in a minor patient’s file without the consent of his or her parents or legal guardians. We want to make sure that no parent has to discover the horror that the fate of the child has been decided by someone else without their consent.

 

2021 will be the second legislative session that GLA has worked to pass Simon’s Law. In the 2019/2020 Legislative session, we were able to pass Simon's Law in the Senate, and it nearly passed in the House, but the constraints of the pandemic and subsequent shutdown in 2020 prevented us from finalizing the process.

 

By God’s providence, GLA has been able to spend that time working with leaders across the state to ensure that the strongest, most effective bill possible will be able to pass. We have not only worked alongside our partners in the Legislature, but we have gotten support from the Department of Family & Children Services (DFCS) to craft language that would allow Simon’s Law to be effective to protect the rights of not only biological parents, but also foster parents, legal guardians, and other legal custodians.

 

At the hospitals' and physicians' request, certain exceptions apply that would allow a hospital to bypass this process after they have exhausted all reasonable efforts to contact a parent or legal guardian but are unable to do so.

 

Another blessing in disguise with the delays has been that the number of people who have heard Simon's story and decided to stand alongside us as advocates for the vulnerable has exponentially increased. In 2019, we unanimously passed the Senate, and in 2020, we unanimously passed the House Judiciary Committee. In 2021, despite having to start over, the Chairman of the House Judiciary Committee is now one of the key sponsors of Simon's Law, providing critical support to overcome any obstacles between us and the Governor's desk – where we know it will finally be signed into law.

 

In conclusion, it is more than interesting to note that the name Simon means, “To be heard.” So, we are letting Simon's message be heard by the filing and passing of this much-needed legislation.

  

 

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[1] https://www.clapa.com/what-is-cleft-lip-palate/

[2] https://www.trisomy18.org/what-is-trisomy-18/

[3] https://www.trisomy18.org/what-is-trisomy-18/how-is-the-baby-affected/

[4] https://medlineplus.gov/ency/patientinstructions/000473.htm

[5] https://www.legis.ga.gov/legislation/59174