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Baby Isaiah’s Case Part of a National Trend Say Advocates for the Disabled

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By Patrick B. Craine

EDMONTON, Alberta, January 20, 2010 (LifeSiteNews.com) – While Isaac and Rebecka May, the Canadian couple who are fighting for their new-born baby’s life, are awaiting a January 27th judgment on their petition for a 90-day injunction against their hospital's order to remove their baby Isaiah's ventilator, some advocates for the disabled are saying that what the May’s are experiencing is shockingly common in Canada.

According to Sam Sansalone, father of Katya Sansalone, who was born 8 years ago with full trisomy 13, in Canada “profoundly disabled kids are routinely – and intentionally – not treated with life-saving intervention.”  Sansalone serves as co-chair of the Advisory Committee of Family to Family Connections at the Alberta Children’s Hospital, a family-centered care initiative recently launched in Southern Alberta. 

He said that “the dynamic that we had to fight became very quickly and firmly entrenched as soon as we had a genetic diagnosis.”“The clear mandate, at least at that time, was that you don't save these disabled children's lives,” he continued.  “You allow them to die – even though the needed interventions are exactly the same as would routinely and unquestionably be given to quote-unquote normal children.”

Katya Sansalone was born with a cardiac condition that is associated with her chromosomal defect.  The Sansalones fought hard with their hospital, the Hospital for Sick Children in Toronto, to have them perform the cardiac surgery that Katya needed.

The hospital initially refused to do the surgery, he said, but “they didn't make it look that way.”“Initially they said we had a choice, and then they proceeded with trying to influence that choice by giving us false information about the range of outcomes,” he continued.

Sansalone attributed their success in part to the fact that his wife is a doctor, which helped the family to research Katya's condition. This research allowed them to be “not so easily fooled by this kind of misinformation.”

Sansalone said the hospital “actually tried to hide medical literature from me.”  He saw that on one occasion the neonatologist had a key study on a clipboard that actually dispelled myths about Katya's condition that the hospital had perpetuated, but the doctor held the study out as though it supported their position.  “When I tried to read it, the neonatologist doctor actually pulled it away from my view,” he said.

Sansalone believes their experience might have some parallels to what the Mays are now going through with the Stollery Children's Hospital.  “I hear that they were being denied ... regular access to the patient chart – reading it and seeing the imaging.”

“That is completely illegal, and it is entirely in the parents' right to have as much access as they need to become informed,” he said. “When you have that parental scrutiny of the chart, [the hospital staff's] behaviour, because it will be more scrutinized, will be in better form. ... Terrible things are done behind parents' backs.”

Sansalone pointed out the case of baby Annie Farlow, who also had trisomy 13, but died five years ago at the Hospital for Sick Children in Toronto.

In an September-October 2009 article for the prestigious Hastings Center Report, Annie's mother Barbara told the story of how she and her husband were misinformed and deceived by doctors who she says were not interested in giving Annie the care she needed to survive.

Annie was born especially healthy for her condition, but on her 80th day she suffered a respiratory crash.  Based on the advice of their pediatrician and hospital staff, the Farlows agreed to not have Annie intubated, and she died shortly thereafter.

Barbara writes about how she was suspicious about certain irregularities in the events leading up to Annie's death.  “Although I felt guilty, ashamed, and ungrateful to be so suspicious, I ordered Annie’s medical records to look at the events of her last hours,” she says.

“I was shocked by what we found.”

The intensive care specialist, she discovered, had ordered that Annie not be resuscitated hours before they had consented.  Further, they had not been informed that even from the fifth day of her life, there were signs that Annie's condition was deteriorating.  Additionally, a pulmonologist had ordered tests for a dangerous condition, which were cancelled.

“To this day, it is unclear to us whether our daughter’s death was preventable or inevitable,” she wrote.  “In either case, Annie had suffered terribly and unnecessarily as she slowly asphyxiated to death. The lack of transparency in the treatment plan ensured that she received neither appropriate lifesaving care nor effective palliation.”

CTV Edmonton reported yesterday on another similar case to Baby Isaiah's, in which the parents were only successful in saving their baby after a fight with medical staff.

Turner Kersey was born three years ago, 14 weeks prematurely, with severe brain damage due to a lack of oxygen during birth.  Doctors told his family that he would be vegetative for the rest of his life, and pressured them to take him off life support.

"It was a large fight on our part in order to have our voices heard," said Brandy Kersey, Turner's mother.  They said "that we should take him off life support ... that we should let life take its course.”

The Kerseys were successful in obtaining the necessary surgery for Turner, and now, says Brandy, "He's doing everything they said he wouldn't. He walks, he talks, he dances, he sings, he counts to 20."

Dr. Paul Byrne, a neonatologist with nearly fifty years of experience, who has been advising Isaac and Rebecka, told LifeSiteNews yesterday how Stollery Children's Hospital has refused to give baby Isaiah appropriate and standard care.

Besides putting Isaiah on a ventilator, he said the doctors have not conducted blood tests or blood counts, and that the hospital has refused to do a tracheotomy, which would be standard in Isaiah's case, despite Isaac and Rebecka's pleading.

“I have a hard time believing how all of this is going on, but on the other hand, I don't have [a] hard time ... in the sense that these things are going on much more commonly than anybody ever realizes,” he said.

Mark Pickup, an advocate for disability issues who has been involved in the Mays' case, urged the hospital to respect the parents' desire to preserve Isaiah's life.

“We must always make decisions that default toward life,” he said.  “The parents are not in favour of the hospital's actions here, and I would urge the hospital to not make that decision to remove the respirator.  Allow other physicians to take a look at this case.  There may be a way out that's life-affirming, not life-denying.”


See the Facebook group in support of Baby Isaiah: Prayers for Baby Isaiah James here.

See the Facebook group seeking justice for Annie Farlow: Justice for Annie here.

Contact Information:

Stollery Children's Hospital
8440 112 Street Northwest
Edmonton, AB T6G 2B7
General Phone Line: (780) 407-8822

Alberta Health Services - Complaints
Mail Slot 57
11111 Jasper Avenue
Edmonton, Alberta T5K 0L4
Toll-free: 1-877-753-2170
Telephone: 780-342-8080
Fax: 1-877-871-4340

Dr. Ernest Z. Phillipos, Director of Neonatal Intensive Care Unit
Stollery Children's Hospital
Phone: 780-407-1305
Fax: 780-407-3030
E-mail: [email protected]

Gene Zwozdesky, Alberta Minister of Health
208 Legislature Building
10800 - 97 Avenue
Edmonton, AB T5K 2B6
Phone: 780 427-3665
Fax: 780 415-0961
E-mail: [email protected]

Office of Premier Ed Stelmach
Room 307, Legislature Building
10800 - 97th Avenue
Edmonton, Alberta
T5K 2B6
Phone: (780) 427 2251
Fax: (780) 427 1349
E-mail: [email protected]


See related LifeSiteNews.com coverage:

Young Canadian Parents Fighting Hospital to Save Their Baby's Life
http://www.lifesitenews.com/ldn/2010/jan/10011910.html

Annie's Story: The Tragic Death of a Girl with Trisomy 13 - PART 1
http://www.lifesitenews.com/ldn/2008/jun/08061911.html

Parents Lose Malpractice Suit Against Toronto Sick Children's Hospital Over Baby Daughter's Death
http://www.lifesitenews.com/ldn/2009/nov/09113009.html

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Newsbusters Staff

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Disney ABC embraces X-rated anti-Christian bigot Dan Savage in new prime time show

Newsbusters Staff
By

March 30, 2015 (NewsBusters.org) -- Media Research Center (MRC) and Family Research Council (FRC) are launching a joint national campaign to educate the public about a Disney ABC sitcom pilot based on the life of bigoted activist Dan Savage. MRC and FRC contacted Ben Sherwood, president of Disney/ABC Television Group, more than two weeks ago urging him to put a stop to this atrocity but received no response. [Read the full letter]

A perusal of Dan Savage’s work reveals a career built on advocating violence — even murder — and spewing hatred against people of faith. Savage has spared no one with whom he disagrees from his vitriolic hate speech. Despite his extremism, vulgarity, and unabashed encouragement of dangerous sexual practices, Disney ABC is moving forward with this show, disgustingly titled “Family of the Year.”

Media Research Center President Brent Bozell reacts:

“Disney ABC’s decision to effectively advance Dan Savage’s calls for violence against conservatives and his extremist attacks against people of faith, particularly evangelicals and Catholics, is appalling and outrageous. If hate speech were a crime, this man would be charged with a felony. Disney ABC giving Dan Savage a platform for his anti-religious bigotry is mind-boggling and their silence is deafening.

“By creating a pilot based on the life of this hatemonger and bringing him on as a producer, Disney ABC is sending a signal that they endorse Dan Savage’s wish that a man be murdered. He has stated, ‘Carl Romanelli should be dragged behind a pickup truck until there’s nothing left but the rope.’ ABC knows this. We told them explicitly.

“If the production of ‘Family of the Year’ is allowed to continue, not just Christians but all people of goodwill can only surmise that the company Walt Disney created is endorsing violence.”

Family Research Council President Tony Perkins reacts:

“Does ABC really want to produce a pilot show based on a vile bully like Dan Savage?  Do Dan Savage’s over-the top-obscenity, intimidation of teenagers and even violent rhetoric reflect the values of Disney?  Partnering with Dan Savage and endorsing his x-rated message will be abandoning the wholesome values that have attracted millions of families to Walt Disney.”

Dan Savage has made numerous comments about conservatives, evangelicals, and Catholics that offend basic standards of decency. They include:

  • Proclaiming that he sometimes thinks about “f****ing the shit out of” Senator Rick Santorum

  • Calling for Christians at a high school conference to “ignore the bull**** in the Bible”

  • Saying that “the only thing that stands between my d*** and Brad Pitt’s mouth is a piece of paper” when expressing his feelings on Pope Benedict’s opposition to gay marriage

  • Promoting marital infidelity

  • Saying “Carl Romanelli should be dragged behind a pickup truck until there’s nothing left but the rope.”

  • Telling Bill Maher that he wished Republicans “were all f***ing dead”

  • Telling Dr. Ben Carson to “suck my d***. Name the time and place and I’ll bring my d*** and a camera crew and you can s*** me off and win the argument.”

Reprinted with permission from Newsbusters

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Jacqueline Harvey

Ending the end-of-life impasse: Texas is poised to ban doctor-imposed death by starvation

Jacqueline Harvey
By Jacqueline Harvey

AUSTIN, Texas, March 30, 2015 (TexasInsider.org)  After five consecutive sessions of bitter battles over end-of-life bills, the Texas Legislature is finally poised to pass the first reform to the Texas Advance Directives Act (TADA) in 12 years. An issue that created uncanny adversaries out of natural allies, and equally odd bedfellows, has finally found common ground in H.B. 3074 by State Rep. Drew Springer.  

H.B. 3074 simply prohibits doctor-imposed euthanasia by starvation and dehydration.

Since H.B. 3074 includes only those provisions and language that all major organizations are on record as having deemed acceptable in previous legislative sessions, there is finally hope of ending the end-of-life impasse in the Texas Capitol.

Many would be surprised to learn that Texas law allows physicians to forcibly remove a feeding tube against the will of the patient and their family. In fact, there is a greater legal penalty for failing to feed or water an animal than for a hospital to deny a human being food and water through a tube.

This is because there is no penalty whatsoever for a healthcare provider who wishes to deny artificially-administered nutrition and hydration (AANH). According to Texas Health and Safety Code, “every living dumb creature” is legally entitled access to suitable food and water.

Denying an animal food and water, like in this January case in San Antonio, is punishable by civil fines up to $10,000 and criminal penalties up to two years in jail per offense. Yet Texas law allows health care providers to forcibly deny food and water from human beings – what they would not be able to legally do to their housecat. And healthcare providers are immune from civil and criminal penalties for denial of food and water to human beings as long as they follow the current statutory process which is sorely lacking in safeguards.

Therefore, while it is surprising that Texas has the only state law that explicitly mentions food and water delivered artificially for the purpose of completely permitting its forced denial (the other six states mention AANH explicitly for the opposite purpose, to limit or prohibit its refusal), it is not at all surprising that the issue of protecting a patient’s right to food and water is perhaps the one point of consensus across all major stakeholders.

H.B. 3074 is the first TADA reform bill to include only this provision that is agreed upon across all major players in previous legislative sessions.

There are irreconcilable ideological differences between two major right-to-life organizations that should supposedly be like-minded: Texas Alliance for Life and Texas Right to Life. Each faction (along with their respective allies) have previously sponsored broad and ambitious bills to either preserve but reform the current law (Texas Alliance for Life’s position) or overturn it altogether as Texas Right to Life aims to do.

Prior to H.B. 3074, bills filed by major advocacy organizations have often included AANH, but also a host of other provisions that were so contentious and unacceptable to other organizations that each bill ultimately died, and this mutually-agreed-upon and vital reform always died along with it.

2011 & 2013 Legislative Sessions present prime example

This 2011 media report shows the clear consensus on need for legislation to simply address the need to protect patients’ rights to food and water:

“Hughes [bill sponsor for Texas Right to Life] has widespread support for one of his bill’s goals: making food and water a necessary part of treatment and not something that can be discontinued, unless providing it would harm the patient.”

Nonetheless, in 2013, both organizations and their allies filed complicated, contentious opposing bills, both of which would have protected a patient’s right to food and water but each bill also included provisions the rival group saw as contrary to their goals. Both bills were ultimately defeated and neither group was able to achieve protections for patients at risk of forced starvation and dehydration – a mutual goal that could have been met through a third, narrow bill like H.B. 3074.

H.B. 3074 finally focuses on what unites the organizations involved rather than what divides them, since these differences have resulted in a 12 year standoff with no progress whatsoever.

H.B. 3074 is progress that is pre-negotiated and pre-approved.

It is not a fertile springboard for negotiations on an area of mutual agreement. Rather it is the culmination of years of previous negotiations on bills that all came too late, either due to the complexnature of rival bills, the controversy involved, or even both.

On the contrary, H.B. 3074 is not just simply an area of agreement; moreover, it is has already been negotiated. It should not be stymied by disagreements on language, since Texas Alliance for Life and Texas Right to Life (along with their allies) were able to agree on language in 2007 with C.S.S.B. 439. C.S.S.B. 439 reads that, unlike the status quo that places no legal conditions on when food and water may be withdrawn, it would be permitted for those in a terminal condition if,

“reasonable medical evidence indicates the provision of artificial nutrition and hydration may hasten the patient’s death or seriously exacerbate other major medical problems and the risk of serious medical pain or discomfort that cannot be alleviated based on reasonable medical judgment outweighs the benefit of continued artificial nutrition and hydration.”

This language is strikingly similar to H.B. 3074 which states, “except that artificially administered nutrition and hydration must be provided unless, based on reasonable medical judgment, providingartificially administered nutrition and hydration would:

  1. Hasten the patient’s death;
  2. Seriously exacerbate other major medical problems not outweighed by the benefit of the provision of the treatment;
  3. Result in substantial irremediable physical pain, suffering, or discomfort not outweighed by the benefit of the provision of the treatment;
  4. Be medically ineffective; or
  5. Be contrary to the patient’s clearly stated desire not to receive artificially administered nutrition or hydration.”

With minimal exceptions (the explicit mention of the word terminal, the issue of medical effectiveness and the patient’s right to refuse), the language is virtually identical, and in 2007 Texas Right to Life affirmed this language as clarifying that “ANH can only be withdrawn if the risk of providing ANH is greater than the benefit of continuing it.”

Texas Right to Life would support the language in H.B. 3074 that already has Texas Alliance for Life’s endorsement. Any reconciliation on the minor differences in language would therefore be minimal and could be made by either side, but ultimately, both sides and their allies would gain a huge victory – the first victory in 12 years on this vital issue.

It seems that the Texas Advance Directive Act, even among its sympathizers, has something for everyone to oppose.

The passage of H.B. 3074 and the legal restoration of rights to feeding tubes for Texas patients will not begin to satisfy critics of the Texas Advance Directives Act who desire much greater changes to the law and will assuredly continue to pursue them. H.B. 3074 in no way marks the end for healthcare reform, but perhaps a shift from the belief that anything short of sweeping changes is an endorsement of the status quo.

Rather, we can look at H.B. 3074 as breaking a barrier and indicating larger changes are possible.

And if nothing else, by passing H.B. 3074 introduced by State Rep. Drew Springer, we afford human beings in Texas the same legal access to food and water that we give to our horses. What is cruel to do to an animal remains legal to do to humans in Texas if organizations continue to insist on the whole of their agenda rather than agreeing to smaller bills like H.B. 3074.

The question is, can twelve years of bad blood and bickering be set aside for even this most noble of causes?

Reprinted from TexasInsider.org with the author's permission. 

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This is thanks only to the leaders, activists, and ordinary readers just like you who have recognized the importance truth plays in turning the tides of the Culture.

I want to thank the many readers who helped bring us within striking distance of our minimum goal with their donations over the weekend. 

But though we have made great strides in the past few days, we still need many more donations if we are going to have any hope of making it all the way by April 1st.

In these final, anxious days of our quarterly campaigns, I am always tempted to give in to fear, imagining what will happen if we don’t reach our goal.

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