By Sheryl Crosier
Editor’s note. Missouri State Rep Bill Kidd has filed HB 1915, Simon’s Law. It has two basic components. First, a health care facility must let a patient, resident or a prospective patient or resident know if they have a futility policy that will limit care in any way. Second, a do-not-resuscitate order cannot be placed in a minor child’s medical file without the written permission of at least one parent or legal guardian.
On September 7, 2010, God blessed us with a beautiful baby boy named Simon. His name means, “To be heard.” Even with a bilateral cleft lip, he was absolutely perfect to our family.
Did you know that having one extra chromosome could lead to denial of treatment and care withheld? On Simon’s third day of life, he was diagnosed with trisomy 18. Many doctors declare that trisomy 18 is “incompatible with life,” despite evidence of the contrary in those who survive for months, years and even decades.
On December 3, Simon’s oxygen saturation levels began to fall. We were told this is the end, nothing could be done. Simon drew his last breaths, I asked again what could be done and I was told “nothing.” At 10:45am December 3, 2010, Simon died.
Imagine watching your child take their last breaths, his oxygen saturation levels plummet and the medical professionals do nothing.
Later, we found out there was a Do Not Resuscitate (DNR) in his medical file which explains why the medical professionals stood around and did nothing.
On top of that we found out Simon was only getting comfort feeds-the least amount of food, not intended for nourishment. It means they starve you to death. If Simon hadn’t stopped breathing, he might have starved to death.
It was a battle we fought to defend our son’s life and dignity. Not only were Simon’s human rights violated, as he was a victim of genetic discrimination, but also our parental rights were taken away. When our son, Simon was a living, breathing human being, who brought incredible joy to his family; and he experienced love and joy from us…did he NOT deserve the right to live?
Someone else decided our son’s life didn’t have value. Care was withheld and a DNR order was placed in our son’s chart, without our knowledge or consent as Simon’s parents. Ultimately, our wishes were ignored and Simon’s death was expedited.
I can’t bring my son back. But, I want to make sure this doesn’t happen to another child, your child and my other children. In my opinion, no one loves their child more than their parent. Do not let this happen to your child.