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.
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
Dr. Ernest Z. Phillipos, Director of Neonatal Intensive Care Unit
Stollery Children's Hospital
Gene Zwozdesky, Alberta Minister of Health
208 Legislature Building
10800 - 97 Avenue
Edmonton, AB T5K 2B6
Phone: 780 427-3665
Fax: 780 415-0961
Office of Premier Ed Stelmach
Room 307, Legislature Building
10800 - 97th Avenue
Phone: (780) 427 2251
Fax: (780) 427 1349
See related LifeSiteNews.com coverage:
Young Canadian Parents Fighting Hospital to Save Their Baby's Life
Annie's Story: The Tragic Death of a Girl with Trisomy 13 - PART 1
Parents Lose Malpractice Suit Against Toronto Sick Children's Hospital Over Baby Daughter's Death