Simon’s Law: Who Decides?


Screen Shot 2014-12-10 at 10.47.16 AM

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.

_________Simon’s Law_______________

0474H.01I

 

AN ACT

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

www.simonismyname.com

 

 

Filed Under: Policy

Tags:, ,

Global Genes Comments

  1. i agree with you Maureen

  2. At 14 days old we too our daughter home to be loved and cuddled by her family as we were told it was unusual for her to have madecitvthis far but medically there was nothing they could do for her….so after a lot of thought we chose for her to be loved at home – no medical support providd in the first instance –

  3. Sheila Adkins says:

    As a mother to a son whom was 28weeks gestation and a daughter with Prader Willi syndrome I can not imagine any health care provider not doing everything in their power to keep my child alive! I live in Virginia and both of my babies received care at Carilion Roanoke Memorial hospital, I must say all of our providers have been god sent! My son is now 7 and a normal happy first grader, he had four surgeries by a year of age three by the time he has two months, wasn’t supposed to be on the earth yet!y daughter is doing great she will be two in April and is an angel! I hope that VA has a similar law but definitely worth checking in on but I hope Missouri gets “Simons law” passed. I hate that a mother had to lose her child only to find out it could have been different!

  4. This is why medical treatment needs to be individualized, NOT ‘cookie cutter’ medicine, because not ‘one size’ (or one way/one decision) ‘fits all’.

  5. Cyndi Mouton says:

    First off.. Thank God for Simons Law! My heart hurts for this family! Second, Stacy Maddox, I’m sorry for your loss, Dr. or not… I’m sorry ,as a mother that has lost many children, but THANK God none of the Drs felt the way you do when my son was born at 27 1/2 weeks , 8th pregnancy and first living birth, that even though they said he wouldn’t live 72hrs, they didn’t give up on him, not did we!:) He was tiny but mighty! He’s now a 21 year old combat medic in the Army! My godsons as well were 25 week gestation ,Justin dropped to 14 ozs, first mico preemies in United States with no shunts, or head bleeds, since they were so early and little and had a long road, does that not give my 3 boys the chance to live?!! IV’s in heads, feet, test, surgery, long nights and days… Was ALL worth every moment! They are thriving healthy 21 year olds , leading normal lives! PRAISE GOD for this law! ALL babies deserve a chance, indifferent to others, but OUR CHILDREN! I do understand as with some babies born without a brain or major factors that they could never live through, but starvation.. DNR.. I’m heartbroken for parents that don’t know this can happen!

Speak Your Mind

*