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Posts Tagged ‘Simon’s Law’

Sheryl & Scott Crosier treasured their son, Simon

Sheryl & Scott Crosier lost their son, Simon, to a secret DNR placement

“Simon’s Law” is named for a medically fragile baby born with Trisomy 18 and apnea (breathing difficulty), who died when resuscitation was denied.

His devastated parents, Sheryl and Scott Crosier, only learned later that Simon’s hospital chart contained a DNR [Do Not Resuscitate] that was never discussed, much less permitted by them. They have mounted a grassroots crusade to alert parents and enact this law to protect parents’ rights.

Simon’s Law has the support of numerous pro-life medical groups and professionals, as well as other families who discovered (after the fact) that they also lost a child to a secretly-placed DNR. (see here)

Unfortunately, the medical climate is not tilted in the Crosiers’ favor. A survey of pediatricians last year found that up to 73% of them would issue DNRs without parental permission to children with severe, life-limiting conditions.

Sheryl was recently contacted by a Texas mom with the disturbing account that her 18-month-old son went to the hospital with RSV (a rather common illness) and the hospital tried to place a DNR in the toddler’s chart! The child had no other medical problem or condition but the RSV.

Simon’s Law will insure that DNRs will not be issued unilaterally by physicians and hospitals. All parents need this law–and not only those whose children might be medically discriminated against as lacking “quality of life.”

Brenda Spurlock & Son Zach with Sheryl Crosier

Brenda & Zach Spurlock with Sheryl Crosier(r) support Simon’s Law

KANSAS TESTIMONY
The following is the story of a Kansas mom, with special needs children, who came to testify in favor of Simon’s Law.

Seven and a half years ago, a medically fragile baby boy, Zachariah, was born in a Kansas hospital.

He lacked a significant portion of his skull, and a portion of his brain had developed into a separate sack attached to the back of his head.

Due to those challenges, his hospital chart contained a do-not-resuscitate order (DNR).

A few days after his birth, Zach suffered a long period of apnea and because of the DNR, he was removed from monitors, wrapped in a blanket, and handed to his biological mother to die.

Several minutes into the episode, baby Zach self-resuscitated. At that point his young parents asked medical personnel to do all they could for him.

Zach was alive, but needed to remain hospitalized. His unmarried mom had been matched by the perinatal experts at Alexandra’s House in Kansas City with a “mentor,” Brenda Spurlock, to support her during the pregnancy and afterwards.

Brenda had experience navigating a complicated NICU situation as her own daughter, Tatum, had also been born with a sac bulging from the back of her head. In addition, Tatum had been given a “fatal” diagnosis of Trisomy 18, which included neurological and physiological defects.

As Zach approached one month of age, his birth mom felt increasingly unequipped to care for him. Brenda and her husband Jack adopted Zach, welcoming him into their family of seven children.

Zach & Tatum Spurlock

Zach & Tatum Spurlock

CHILDREN EXCEED DIRE DIAGNOSES
Brenda Spurlock came to the Kansas Capitol Feb.16th to testify in support of Simon’s Law. She told the Senate Federal & State Affairs Committee:

     “We were warned Zach’s life would be very short. In fact, we were told he would likely not live out the month and that the best case scenario was a 3-5 year life span, fraught with life threatening seizures and bouts of pneumonia. We were also warned he would exist in a semi-vegetative state.

Yet he has never suffered a single seizure, nor has he ever experienced a bout of pneumonia. 

The portion of his brain that was removed was thought to contain his visual cortex and we were told he would be blind, but he sees! 

He has cerebral palsy, autism, profound global delays, and hemiplegia on the right side of his body. But he is a delight. He does not know a bad day, only a bad moment, and then he puts that award winning smile back on his face and marches on! 

Our daughter, Tatum, has had full genetic testing and her particular chromosomal tripling has never before been documented or journaled. Her life was judged by an unknown…and they were wrong! Tatum has far surpassed any of the prenatal and postnatal prognoses that were given to us, and on February 10 she celebrated her 9th birthday.

When we adopted Zach, we removed the DNR that had been placed in his medical records. 

I think every parent of a medically-fragile child should be aware of the choice to sign a DNR for their child, and I would hope that choice could be offered tactfully. But I stand firmly against medical professionals making a life choice for an infant or child based on a prenatal diagnosis, or set of tests.”

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Sen. Jacob LaTurner, chair of Senate Federal & State Affairs committee, with Zach & Brenda Spurlock

Today’s hearing on “Simon’s Law” in the Kansas Senate Federal & State Affairs committee room was a tale of two little boys.

One dear boy, Simon, was alive only in cherished memories detailed to the committee. Another, Zach, –whom medical experts claimed would never be more than a “vegetable”—jiggled and squirmed in his seat and would smile at various people in the room, and say “Hi!”

Baby Simon

Baby Simon

Today, Sheryl Crosier was the key witness as Kansas renews consideration of Simon’s Law, SB 85. Simon’s Law passed the Senate 37-3 last spring but didn’t get through the House process in time to become law. Thus hearings started anew this year. Simon’s Law preserves the rights of parents in the issuance of “Do Not Resuscitate ”(DNR) orders to minors.

Sheryl very poignantly recounted (or, perhaps more accurately, relived) how her baby son, Simon, died six years ago in front of her and her husband, Scott, at the hospital where he had lived his entire young, three months of life.

Simon & family

Simon Crosier with family

After the heartbreak of burying their child, the Crosiers discovered that the reason baby Simon was dead was because, without their permission, a “Do Not Resuscitate” (DNR) order had been placed in his medical chart.  The bad news mounted: the hospital had a written “futility” policy concerning when life-sustaining procedures would not be given.

Simon had been diagnosed with Trisomy 18 disorder three days after birth. For many years, such children were immediately labeled as having a lethal condition, and were not treated. The medical community is slowly starting to abandon labeling children like Simon as “incompatible with life,”  according to a brand new article this week that appears in JAMA (the Journal of the American Medical Association.)

Thus began the Crosiers’ crusade to alert parents, especially those with medically fragile children, that a death by secret DNR could happen to them.

Along the way, other parents, researchers and doctors have joined in the crusade to pass Simon’s Law.

The case was strongly made in committee today with a large number of proponents, including Kansas Lt. Gov. Jeff Colyer, who is a surgeon. Four medical groups have supported Simon’s Law since last year. The committee will “work” the bill for passage as early as this coming Monday.

tatum-and-zach

Tatum & Zach Spurlock outstripped “expectations”

The truly beautiful side note to the hearing was the presence of a boy who has far outstripped his “expectations.” Kansans Jack & Brenda Spurlock, whose nine- year-old daughter Tatum has outlived her “fatal” diagnosis of Trisomy 18, came to the Capitol to testify for Simon’s Law.

Tatum was not present today, due to the flu, but her brother, 7 1/2 year-old Zach, melted the hearts of the whole room.

Zach was born without a significant portion of his skull, and with a large occipital encephalocele that contained a portion of his brain. He was predicted to have seizures and other afflictions his whole life. Not so! Zach stayed throughout the one-hour hearing, exhibiting “best behavior.” 

The committee truly witnessed the joy of  a life that has too often been labeled as not worth sustaining, and the tragedy of taking a life due to preconceived “quality of life” judgments.

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pp money (2)The Kansas Legislature adjourned for the year in the wee hours of Monday morning, with two big victories in the area of pro-life healthcare. UPDATE, May 13: Gov. Brownback signed both measures into law this week.

Disappointingly, the time clock hurt us on achieving Simon’s Law, which will be explained further on in this post.

Senate Bill 248, formerly SB 436 (KFL testimony here) was enacted late Sunday evening. It enacts, as permanent law, the “Huelskamp-Kinzer” language prioritizing Title X federal reproductive health money to full-service public health clinics.

Planned Parenthood hates this mechanism because they do not qualify as full-service and it’s a big chunk of Kansas money they no longer get. Planned Parenthood filed a legal challenge against the prioritization but lost in federal appeals court. Title X Kansas funding now surpasses the pre-litigation level.

Sen. Masterson, Sen. Tyson

Sen. Masterson, Sen. Tyson

Huelskamp-Kinzer language is a model way for states to improve healthcare for the indigent, by funneling Title X money to comprehensive services at “safety net” clinics and public hospitals.

State Sen. Caryn Tyson (R- Parker) carried the bill and Sen. Ty Masterson (R-Andover) shepherded it to completion. The vote was 87-34 in the House and 32-8 in the Senate.

MIDWIVES’ ROLE IN ABORTION STOPPED
Kansas passed a large bill, HB 2615, with a number of sections regulating health care services and providers. The section governing the independent practice of midwives includes pro-life language:
            Nothing in the independent practice of midwifery act should be call midwifeconstrued to authorize a certified nurse-midwife engaging in the independent practice of midwifery under such act to perform, induce or prescribe drugs for an abortion.”

There was quite a bit of educating to do on this subject as some legislators just didn’t want to believe that nurse midwives– those most intimately dedicated to nurturing labor and delivery– would actually do abortions.  Yet the National Abortion Federation has long had a strategy for increasing “access to abortion” (i.e. more babies aborted) by expanding the scope of practice of lower level health care professionals. Read more on this topic, including a memo from National Right to Life Director of State Legislation, Mary Spaulding Balch, J.D. here.

Sen. O'Donnell, Sen. Pilcher Cook

Sen. O’Donnell, Sen. Pilcher Cook

Sen. Sen. Michael O’Donnell (R-Wichita) and Sen. Mary Pilcher Cook (R-Shawnee) were real champions on insuring the abortion ban stayed with the midwives’ regulation. The House passed the final healthcare bill 115-7, but only after Senators voted 26-12 to insure that the final version kept the pro-life language.

TIME CRUNCH HURT SIMON’s LAW
This year’s Kansas legislature was dominated by a budget crisis, and in an unprecedented move, leadership cancelled two weeks of legislative session time.  This really doomed House consideration of Simon’s Law, despite heroic

Sen. Laturner, Rep. Pauls

Sen. LaTurner, Rep. Pauls

attempts by bill sponsor, Sen. Jacob LaTurner (R-Pittsburg), vice-chair of the Senate Federal & State Affairs committee, and Rep. Jan Pauls (R-Hutchinson), Chair of the House Federal & State Affairs committee, to maneuver it to get a House vote.

Simon’s Law is a vital bill to protect parental rights in preventing the unilateral issuance of Do Not Resuscitate (DNR) for minors. The measure has gained tremendous public enthusiasm, and secured an amazing 37-3 bipartisan vote in the Kansas Senate. With support of pediatric specialists across the country and four pro-life medical groups, Kansas ought to be enacting Simon’s Law next year.

baby SImon Crosier died to a secret DNR

baby Simon Crosier died due to a secret DNR

Lest too rosy a picture be painted about Simon’s Law, however, it must be noted that not one Kansas medical facility or physician group officially testified about the measure—pro, con or neutral—and many well-paid medical lobbyists out of the public eye pushed to kill the bill. Apparently, the current ability to issue DNRs unilaterally is sadly a power that too many medical entities do not want brokered by parents.

The movement to educate the public about discrimination in life-sustaining procedures has just begun and the entire nation needs Simon’s Law.

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Heart stethPro-lifers across the nation have been reading our series of articles on the “Faces & Facts of Simon’s Law,” and are urging Kansas to protect children and empower parents by enacting this vital measure.

The state legislature returns to work Wednesday following a short recess. The Kansas Senate has already passed SB 437, Simon’s Law, by a notable bipartisan 37-3 vote last month. The bill will prevent minors from being denied life-sustaining treatment without parental permission and will require, upon request, disclosure of hospital policies on “futile care.”

Recently, four medical associations have published their strong support for Simon’s Law, see here. The following are some excerpts from their endorsements:

  • ACPEDSThe American College of Pediatricians informs that, “Once inconceivable, the practice of hospital staff placing a do not resuscitate (DNR) order on a child’s chart without the informed consent of the child’s parents or legal guardian is on the rise… increasingly predicated upon the ill-defined and subjective concept of ‘quality of life’ with one or more disabilities considered intolerable.”
  • AAPSThe Association of American Physicians & Surgeons writes, “care judged by some to be ‘futile’ is often life-saving, even if it does not restore full function… [When] there is a time when medical intervention provides no benefit, it is unethical and should be unlawful for a medical facility to determine that point unilaterally.”
  • NAPNThe National Association of Prolife Nurses asserts that parents have “a right to full disclosure and participation in the healthcare decisions of their disabled or severely ill children.”
  • The Kansas City (Kansas/Missouri) Guild of the Catholic Medical Association believes Simon’s Law “recognizes the right practice of medicine… the sacredness of life and the primary role Cath guildparents have in caring for a child. [F]acilities or practitioners cannot and should not determine that a patient’s life is no longer deserving of medical care.”

These medical group endorsements acknowledge that DNRs are very often being issued due to negative judgments about the kind of life the child will live—not upon a medical assessment of impending death. In shorthand, such judgments about ‘futility’ are qualitative, not physiological.

The families that submitted testimony for Simon’s Law recounted that too many medical personnel clearly viewed their child as a victim of disabilities, without a rewarding life–a view that the family vigorously disputed.

Neonatologist McCaffrey

Dr. McCaffrey

Neonatologist Martin McCaffrey regularly treats severely ill infants and counsels many families about Trisomy 18 and other related chromosomal conditions. He advises:

“ A medical team using its subjective prediction of future quality of life as criteria to make life and death decisions,and  forcing that determination is a tyrannical enforcement of prejudice towards children with disabilities.

The case which prompted Simon’s Law legislation is a prime example of such bias.

It is my sincere hope that Simon’s Law will pass. The only physicians and hospitals that would be impacted by this legislation are those employing unilateral [orders not to resuscitate].”

Knowledgeable medical groups and individuals agree that Simon’s Law is a necessary corrective measure.

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Krissy Krotzer

Krissy Krotzer

Simon’s Law insures that life-sustaining treatment (resuscitation, nutrition, medicine) will not be denied to minors without parental consent. This bill has already passed the Kansas Senate 37-3 and work on its passage in the House will continue when legislators return April 27.

The testimony for Simon’s Law in Kansas documented a consistent medical bias toward children with chromosomal disorders. Researchers and parents described how these children were denied scheduled surgeries after their genetic conditions were verified. Furthermore, they were denied treatment to save their lives after DNR (Do Not Resuscitate) orders were secretly placed on their medical charts.

The prevailing medical viewpoint on children with trisomy conditions is almost uniformly negative, essentially recommending provision of comfort care only. Kansas legislators learned that families of these children often had to fight for their child’s life both before birth, when being urged to abort, and after delivery, when physicians refused requested interventions.

Dr. Martin McCaffrey is a pro-life neonatologist with over 20 years in this arena. He supports Simon’s Law with this perspective: It is shocking that the neonatal community in the United States has reached a point where a significant number of providers feel it is justified to place a unilateral Do Not Resuscitate [or attempt resuscitation] order on a child’s chart, based on a neurologic prognosis which parents are perfectly willing to accept, but the medical team does not.”

Consider the stresses imposed by the medical community on the family of Kristina (Krissy) Krotzer. Her mother, Terre, writes:

“Our daughter Kristina was diagnosed prenatally with Trisomy 18. At the time they confirmed the diagnosis via amniocentesis they let us know that although we were at 22 weeks it would still be acceptable to “interrupt” the pregnancy, i.e., terminate, because the fetus was still smaller than a typical “20 week fetus” but we would need to decide quickly. We declined.

Later in our pregnancy we began preparing for our daughter’s birth. In our discussion with the doctors we were very clear that we would do whatever it took to get our daughter into this world alive. We didn’t know how much time we would get but it was important to us to give her life if at all possible.

The doctor refused to consider c-section as she said it was a non-viable pregnancy and even refused to monitor my daughter during labor because, and I quote, “I don’t want you to know if she dies or not.” 

This doctor was fired.

A new doctor agreed to the c-section if necessary. We scheduled a day to induce (at 39 weeks) so that this doctor would be guaranteed to be there as he was the only one we trusted to give our daughter a chance.

We were very clear that our birth plan was to get her into this world alive and from there decide –based on her actual overall health and medical needs– what to do each step of the way. Never could anyone have interpreted our desires to include a Do Not Resuscitate order.

Labor began and our baby’s heart rate dropped with each contraction. It was decided a C-section was necessary. Our daughter was born soon after. She presented with Apgar scores of 5 and 8 and needed only a small amount of “blow by” oxygen. We spent time together and she was taken to the intermediate care NICU for more evaluation and monitoring. She did fine, and we went home 5 days later with our tiny 3lb. 8oz. little girl.

Krissy 16th bday

Krissy’s 16th birthday

Today Krissy is 16 years old and a sophomore in high school. While she’s had a handful of medical issues, Kristina has done well.

Four years ago I was looking through the medical records from Kristina’s birth and found that– unbeknownst to us– the hospital had placed a DNR on Kristina prior to her birth.

This DNR was not our choice or decision and if I hadn’t looked back at the  records, we never would have known. To this day, every time Kristina is hospitalized we get challenged over the fact that we have her listed as a full  code.

We were once told by a physician, ‘you’ve had 10 good years with her, isn’t that enough?’

Krissy has a happy, healthy, full quality of life. When that changes, our decisions might change. But either way it should always be our choice.”

Terre Krotzer expresses the sentiment of many families who testified in support of Simon’s Law. Just imagine how you’d react to doctors who think your child has lived long enough. Imagine having to constantly fear that medical personnel might refuse to sustain the life of your child.

That’s the fear and apprehension that Simon’s Law will allay.

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Simon napping with his father, Scott Crosier

Scott Crosier napped with baby Simon

Recent posts have revealed the facts surrounding secretly placed “Do Not Resuscitate” (DNR) orders without parental notice or consent that resulted in the deaths of Simon Crosier and Megan Barnes. (see here and here)

Testimonies from both families, as well as detailed testimonies from other families and supportive physicians and researchers, were submitted to the Kansas Senate Public Health and Welfare committee urging enactment of ‘Simon’s Law.’ (see here)

By an overwhelming bipartisan vote of 37-3 on March 22, the Kansas Senate passed Simon’s Law to

  1. insure no DNR order can be issued to a minor without consent of parents/guardians, and
  2. require that a hospital/medical facility, upon patient request, disclose any ‘futility policies’ in place.

The House can take action on the bill when the Kansas legislature reconvenes April 27.

There was no opposition presented against Simon’s Law in committee. While not one medical group or facility testified at the Senate hearing, a stealth campaign to kill this bill is now being waged by lobbyists for various hospitals.

Their position is that Simon’s Law is unneeded (or even harmful!) and that reasoning was encapsulated in an unsigned March 29 editorial by the Topeka Capital Journal (TCJ), a prominent Kansas newspaper.

Neither proponents of the bill, nor Kansans for Life, were contacted by TCJ to explain the need for Simon’s Law within the current climate in which certain newborns, and children of other ages, are labeled “unworthy” of life-sustaining care.

BAD FACTS= BAD EDITORIAL
The TCJ editorial asserted that, currently, DNR “orders aren’t to be placed in a minor’s chart without full disclosure to the parent or guardian.” 

However– in fact– disclosure does NOT always occur, as the cases brought to the Senate Health committee illustrate. In these instances, later verified by researchers, children lost their lives and necessary medical services, because negative value judgments were made about the children with chromosomal abnormalities.

Furthermore, “disclosing” a DNR is just stating that a DNR is being imposed; it is not seeking permission.

The TCJ editorial tries to claim the high ground by asserting Simon’s Law could “inflict unnecessary suffering upon children.” And as the final kicker, the editorial scolds –in the identical manner pro-abortionists do– that legislators are “primarily untrained in the area of medicine” and “shouldn’t play God.”

Scott Crosier, the father of Simon Crosier, for whom the Simon’s Law legislation is named, rebutted the editorial in a letter published April 9. “Unfortunately, hospitals’ secretive futility policies DO give them the ability to place DNRs [on minors] without [parental] knowledge or consent despite the rhetoric presented.”

Simon’s dad painfully experienced what the TCJ editorial seems ignorant of: that denial of life-sustaining treatment is being applied based on value chromosome sloganjudgments, specifically by those “with medical training.”

FUTILITY JUDGMENT BASED ON OPINION
Mr. Crosier wrote, “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. 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.”

Mr. Crosier fundamentally disagrees that legislators need any medical training to recognize the need for Simon’s Law:

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.”

TCJ did not include this last relevant paragraph from the letter they published from Simon’s dad: “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.”

Anyone with even limited experience with being hospitalized knows that the facilities and doctors do indeed insist on signed permission, often multiple times in just one stay. The hospital lobbyists really have no credible excuse for not getting written parental permission, which is presumably why they never came to a public podium to testify about Simon’s Law.

Crosier’s unpublished paragraph completely undercuts the entire TCJ editorial. Is that why it was omitted?

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Megan Barnes, 1985-2004

Megan Barnes, 1985-2004

Simon’s Law, Kansas Senate Bill 437, would require parent permission before a minor is coded as a Do Not Resuscitate (DNR) and would also require hospitals and other medical facilities, upon request, to disclose any existent “futility” policies. (See more here.)

This is the latest in a series from Kansans for Life that looks at the real lives affected when Do Not Resuscitate (DNR) orders are unilaterally issued by physicians. In the following, Ann and Frank Barnes share the details of how this practice ended the life of their precious daughter, Megan.

“Both our beloved daughter, Megan, and Simon Crosier– for whom the Simon’s Law legislation is named– were born with the same rare syndrome but Megan’s diagnosis was not immediately detected.  She was full term but small, with a ventricular septal defect and a minor lip defect.   Such signs alerted doctors of possible chromosomal problems, so a blood sample was sent for genetic testing.  We were, however, able to bring her home at a week old.

Megan was over two months old when we heard the words “Trisomy 18” and the heartbreaking news that these babies fail to thrive and her life would be brief– up to a year at most.  When questioned as to what would cause her death, the response was a vague, “these babies don’t do well.” Hospice was suggested, but accepting Hospice care would be accepting the diagnosis which our hearts were not ready to do.

She was our daughter and loved, perhaps even more so, because of those predictions.

The fear of Megan dying weighed heavily on our hearts until we stopped waiting for her to die and began finding ways to help her. But in 1985 there was a lack of information about survivors living with this syndrome. We felt alone and longed to meet another child like Megan.

Her geneticist gave us a newsletter from the Support Organization for Trisomy 18, 13 and Related Disorders (SOFT) when she was about 6 months old.  What a life changer! SOFT became both a life-line of information and a second family, with children like our daughter.  SOFT also has a compassionate medical advisor who has helped families for over three decades.  Because of the tremendous sense of worth given to each child at the annual SOFT conferences, we attended many, and still do.

I cannot tell you the number of times we said how glad we were to have Megan.  She gave us purpose, and taught us about patience, perseverance, resilience, unconditional love, and more.  She had a sweet disposition and, like any child, enjoyed attention and praise.  Though she could not talk, she definitely let us know her preferences.  All-time favorites were the Disney video, Beauty and the Beast, a Texas Instrument toy– replaced more than once, and her 17th birthday party.  She enjoyed music and movement and the activity of physical therapy sessions.

Megan was content and knew she was loved, and it was obvious that what she valued most was being with people, especially those who loved her.

On Christmas Day, at age nineteen, Megan was hospitalized for virus-caused dehydration, in a pediatric intensive care unit at a major teaching hospital.

She died four days later.

We were devastated.

Only after her death did we request her hospitalization records and learned the horrible truth that our wishes for life support intervention had been overruled by a verbal order from the “attending” physician to his staff.   Megan had been issued a Do Not Resuscitate (DNR) order without our knowledge or consent. 

Had there been a requirement for a parent signature on a life support order in that hospital, this would not have happened.

It added so much more pain to our grief to learn that our daughter died because we trusted the wrong physician.  Instead of providing needed intervention, he misled us about what was happening, allowed her condition to decline, and then said there was nothing that could be done.

MEGAN’S LAST GIFT
Our daughter’s end-of-life lesson is about the vulnerability of parents and their children when the child is hospitalized. Parent-physician trust requires transparency and respect.

We believe any physician (hospital, medical society or hospital association) opposed to the parental signature requirement on a life support order, as proposed in Simon’s Law, has something to hide; and in some cases wants to control the outcome due to personal views about a particular disability or illness.

Megan outlived the survival statistics we were given when she was an infant, and she is not the only one with Trisomy 18 or Trisomy 13 to have done this as a number of survivors are now young adults!  They have health issues, developmental challenges and a life-limiting disorder, but most importantly, they are living evidence that it is incorrect to claim these disorders are universally lethal.

Clearly, the risk of a Do Not Resuscitate (DNR) code being imposed without parental knowledge or consent is increased for children like Megan and Simon. And this dire risk also applies for any child who suffers critical injury or illness.

We fully support Simon’s Law to help prevent this injustice from happening to another family.”

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