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Posts Tagged ‘Trisomy 18’

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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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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