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 the tears poured from our eyes and others around us as Simon left this world for his eternal home.
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.
If Simon was a healthy 3 month old it would have been an ER moment with people running to save my child. But because he was a child with chromosomal abnormalities, no one in the NICU did a thing.
Later we found out that the only food Simon received through his tube was comfort feeds. When Simon fussed, the medical team gave him drops of sucrose, otherwise known as sugar water. If Simon hadn’t stopped breathing, he might have starved to death.
Because Simon’s diagnosis had a “label” on it, he wasn’t treated for his conditions and medical treatment was withheld. I longed to tell Simon’s story of hope, faith and love so I wrote Simon’s book. I believe my son provided the title I Am Not a Syndrome-My Name Is Simon. Our children are not a labels and are not defects. No person is disposable. Every person has a name and an identity.
Many children are being denied medical care and treatment. Comfort care may be the only option given to parents. Often, babies are given only drops of sugar water-sucrose or nothing at all.
Many times, a Do Not Resuscitate (DNR) is put in the child’s medical charts without the parent’s consent and many children will die. Only after their child has passed away do parents like us discover a DNR was placed in their child’s file or verbally issued by the Doctor in charge.
If a child has apnea, many times they too are not afforded assistance and die. Too often, medication given by medical professionals is purposely overdosed causing the child to die.
Did you know that children like Simon are being administered medications that are contraindicated for their symptoms which may then result in their premature death? How would you feel if you discovered your child was given a drug that caused adverse effects to the point of death?
After my son, Simon’s, death, I discovered that many hospitals and medical facilities have futility policies. This means that any doctor can verbally issue a Do Not Resuscitate order or place one in your child’s medical chart without parental permission or consultation. It doesn’t matter if they are one day old or 17 years old. As long as they are a minor, an attending physician may determine the value of your loved one.
Simon will continue to change hearts and I will continue to increase awareness of patient discrimination and empower parents to make sure their children are getting care.
In October of this year (2014), I met Representative-Elect Bill Kidd while I was speaking in Kansas City, Missouri. Since then, we have continued discussions on futility policies and parental decision making rights.
It is an absolute honor that Simon’s Law (HB113) was filed with the Missouri House of Representatives on December 3, 2014 at approximately 10:45am. Simon passed away 4 years ago on this day (December 3rd) at 10:45am. Hopefully Simon’s Law (HB113) will be passed by both the Missouri House, Senate and signed into law this year. But until then we will need your help and support.
If passed in its current form, Simon’s Law would protect the rights of parents concerning any life sustaining procedures for their minor children. This includes all minor children, not just those with special needs, like Simon.
If you are concerned about parental rights and medical treatment for your child, please read the proposed language of the law found below. My hope is that “Simon’s Law” will someday protect all minor children nationwide.
To amend chapter 191, RSMo, by adding thereto one new section relating to life-sustaining treatment policies of health care facilities.
BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF MISSOURI, AS FOLLOWS:
Section A. Chapter 191, RSMo, is amended by adding thereto one new section, to be known as section 191.250, to read as follows:
191.250. 1. This section shall be known and may be cited as “Simon’s Law”.
2. Upon the request of a patient or resident or a prospective patient or resident, a health care facility, nursing home, or physician shall disclose in writing any policies relating to a patient or resident or the services a patient or resident may receive involving life-sustaining or nonbeneficial treatment within the health care facility or agency.
3. Upon admission and upon request, if the patient or resident or prospective patient or resident is a minor child or minor ward, the health care facility, nursing home, or physician in charge shall provide in writing the policies described in subsection 2 of this section to at least one parent or legal guardian of the patient or resident or prospective patient or resident.
4. No health care facility, nursing home, physician, nurse, or medical staff shall withhold life-sustaining procedures, food, medication, or nutrition, nor place any restrictions on life-sustaining procedures including, but not limited to, food, medication, or nutrition for any minor patient, resident, or ward without the written permission of at least one parent or legal guardian of the minor patient or ward.
5. No do-not-resuscitate order or similar physician’s order shall be instituted either orally or in writing without the written permission of at least one parent or legal guardian of the minor patient or resident or prospective minor patient or resident.
6. Nothing in this section shall require a health care facility, nursing home, or physician to have a written policy relating to or involving life-sustaining or nonbeneficial treatment for minor or adult patients, residents, or wards.
Do you want medical professionals deciding the value of your child?
Contact your Missouri State Representative and State Senator to co-sponsor “Simon’s Law“(House Bill #113) by Representative Elect Bill Kidd, District 20. For more information regarding your local representative, visit www.house.mo.gov website.
by Sheryl Crosier