Letter: Simon’s Law protect’s children’s human rights
The fairy tale that was presented in this article is not what happens in practice each and every day across the country. Many hospitals across the country have secretive futility policies which they are extremely reluctant to disclose and make public because of the operating policies they contain. For clarification, a futility policy allows a hospital and its physicians to make any decision regarding the treatment of a patient they deem to be futile without any input from the patient or family. Bottom line is, hospitals are making business decisions when the lives of our children are at stake.
The author asks if it is really the role of government to take such decisions out of the hands of medically trained professionals. I think a much better question is why the medical professionals ever thought they had the authority take the decision out of the hands of the parents. I think we really have to ask ourselves why the medical profession feels compelled to take life decisions away from families. Do they really believe their medical acumen is so superior to a family’s love?
Too many physicians today lack compassion for their patients and fail to connect with families on any level. Our physician’s favorite statements when Simon was in the NICU were “I don’t know”, “Not for Simon” and “Incompatible with life.” Cold harsh comments to hear regularly when you are pleading with them to do everything they can to help your son.
Unfortunately, hospitals secretive futility policies do give them the ability to place DNRs without your knowledge or consent despite the rhetoric presented in the article. If the hospitals are not going to be completely open and transparent concerning their policies, then we clearly need our government to step in and protect our rights as parents.
Any parent or guardian that has a child under the age of 18 should be fighting to have this bill passed. If your 8-year-old falls off his bike and sustains a head injury or your teenager is in an auto accident and sustains internal injuries, you may not get the opportunity to decide your child’s fate if this law is not passed. Are you willing to put all your faith and trust regarding your child’s treatment with a physician who is most likely a stranger?
The physicians and hospitals have government protections through many federal and state laws, but for some reason Simon’s Law would be a burden for them to get written consent from a parent for a DNR. This makes no sense. If you want to protect your child’s human rights and your parental rights, supporting Simon’s Law really is a no-brainer.
SCOTT CROSIER, Webster Groves, Mo.
I am writing in response to a recent editorial published in the March 29th edition of the Capital Journal titled “DNR decision isn’t one-sided”. I am Simon’s grandmother and a life time Kansas resident. I fully support Simon’s law and I am completely at a loss as to why anyone would oppose this bill. My grandson Simon’s human rights were violated by so called knowledgeable physician’s who I saw do little if anything to help him despite his parent’s pleas for them to fully apply their medical knowledge and expertise. Simon’s parent’s rights were violated when a DNR was placed in his chart without their knowledge. In addition to Simon, I have five other minor grandchildren whose rights I want to see protected, not to mention the rights of my grandchildren’s future children. Medical science and statistics should not overrule a parent’s right to make a life sustaining decision concerning their child.Lois Crosier
I am writing in response to a recent editorial published in the March 30th edition of the Capital Journal titled “DNR decision isn’t one-
sided”. The definition of a “Label” is a word or phrase that describes or identifies something or someone. Believe it or not, everyone
has a label. You may be labeled by your co-workers as “Hard Working” or “Dedicated” or even “Lazy”. Your family may label you as
“Loving” or “Caring” or even “Abusive”. Labels can be encouraging, and as you can see – labels can be damaging. You can be labeled
as Professional, Dedicated and Knowledgeable or you can be labeled as a Work-a-holic, Obsessive, and a Know-it-All. Labels are given
to people every day, whether they like it or not, and whether they want it or not.
Some labels are less forgiving that others, and some carry a larger consequence than others. I myself have a label that I did not
choose, nor did I do anything in my life to deserve this label. My label is “Cancer Victim”. I have cancer, and unless modern medicine
finds a cure for my cancer, I will always have this cancer, and I will always have this label until my cancer takes my life. Yet each day I
hold out hope that there will be a cure found, and that I can live a normal day of my life without that label. Now if I were in a bad car
accident, and I needed life-saving procedures or horrifically painful procedures as one commenter suggested – to keep me alive –
those procedures would be provided to me, whether I requested them or my family – even though I have an incurable cancer. Why?
It’s because my label doesn’t exclude me from fair health care or DNR’s placed on my file at my physician’s discretion.
I would have to agree with one comment that was left concerning this editorial, and that is – why are there two different approaches
to the same situation just because a child is involved. The only true difference is that the child wouldn’t have the legal ability to issue
a living will, but the whole issue revolves around what happens when there is no living will, so by default the right should fall upon
the parents (family) to decide if a DNR is placed and not the doctor.
So why are innocent children with labels such as “Chromosomal Defect” or “Brain Dead” not given the same medical opportunities?
Why are their patient’s rights, no less human rights not honored? Why are their parent’s not given authority to give their child every
opportunity to live? Because of their label, because they are deemed “Not Viable for Life” – yet many of these children are alive and
Many people have commented on this editorial, yet there is not one story of someone who actually lived with or had a loved one
with this label or any medical label that is “Not Viable for Life”. These comments are made in ignorance – ignorance spoke out of the
lack of knowledge or experience. I may not have all the legal knowledge or medical knowledge to argue with some of the opponents
of Simon’s Law, but I do have the experience. I have the experience of having a label, a label of cancer and losing my life to it more
and more each time I have to fight it, and I had a baby that was given a label too, a label of not being viable for life. She died because
she was not given the same prenatal treatments as a normal healthy baby. She died because she had a label, a label given to her
many, many weeks before she was to be born. So why is it that doctors are given the right to choose what is best for my child if they
couldn’t even help us make sure she took her first breath?
In our current society, so many people also claim that it’s the “Mother’s Right” to determine if she wants to abort a baby – yet why
are many of these same people saying it’s not the Mother’s Right to determine if everything is done for her baby and keep their baby
alive – label or no label – it’s up to the doctor?? A husband has to have his wife’s signature to have a vasectomy procedure
performed because by law the wife cannot have her rights stripped of her to have another baby – yet doctors are allowed to
determine if a baby or child’s life is worth continuing to save?? So why are parent’s rights limited due to the situation or label their
child has been given?? And why is that decision solely up to the hospital and/or doctor?
So many people trust doctors with their lives, and they believe everything they are told by a doctor – such as, “We’ll do everything
possible for your child.” or “We’ve done everything we can for them” or “We have your child’s best interest in mind”, when really
these doctors are strangers to us and our families and don’t care for our children as we would and try to do every day. I am sure the
author, who might I point out decided to take the cowardly path and remained anonymous, would not volunteer to be placed in a
life-threatening situation and then allow the medical professionals they have so much faith in – to make the “right decision” when it
is time to either stop treating them or give them every opportunity to live. I guess if their physician decided to put a DNR on them
and just let them die, they can have some comfort in knowing that the hospital will give them sugar water to keep them comfortable.
Simon’s Law is about protecting your child’s human rights and your rights as their parent. I support Simon’s Law because I am a
parent and I love my children.
Thank you for your time reading this reply – Matthew Ridpath
SOFT, trisomy 18,trisomy,trisomy13,patau syndrome, trisomy 13 syndrome, trisomia 13, Edwards syndrome,screening test,prenatal testing,life expectancy,chromosome,genetic, trisomy 18 pictures, level 2 ultrasound, what is trisomy 18, what is trisomy 13,trisomy18.org, trisomy18 foundation, trisomy 18 facts, trisomy 13 facts, amnio, fish,
via Simon’s Law.
Check out just a few of the recent reviews of “I Am Not a Syndrome – My Name is Simon” on Amazon!
September 20, 2013
The compelling and gripping story of Simon Crosier and his family’s decision to choose life is featured on the homepage of the National Right to Life, right below Pope Francis’ statement about the controversial subject of abortion. Sheryl Crosier’s story about her Trisomy 18 son was originally published in the Missouri Right to Life and, as a result, was picked up by the national organization. The story of Simon Crosier is featured in the highly rated book “I Am Not a Syndrome – My Name is Simon” published by All Star Press – Books that Change Lives.
“This is a perfect example of why I was so honored to published Sheryl’s first book,” explained Richard Nilsen, President of All Star Press. “Simon’s story is one that needs to be told. We thank the National Right to Life for the great work that they do and for spreading the message of Simon Crosier.”
Click here to read the 1 page summary of Simon’s story that was recently featured in the Missouri Right to Life newsletter.