A voice for Annie and children with trisomy

Barbara Farlow has emailed to inform us about a recent publication in Pediatrics which gives a voice to parents and their children, like Annie, who have trisomy 13/18. Here are a few related links:

The news release from the University of Montreal: http://www.nouvelles.umontreal.ca/udem-news/news/20120723-children-with-trisomy-13-and-18-and-their-families-are-happy.html
Journal Abstract: http://pediatrics.aappublications.org/content/early/2012/07/18/peds.2012-0151.abstract

Canadian Press Article (Helen Branswell): http://www.globalnews.ca/canada/health/parents+of+babies+born+with+disabling+anomalies+report+they+enrich+families/6442684259/story.html 

Reuters: http://www.reuters.com/article/2012/07/23/us-parents-doctors-kids-clash-idUSBRE86M02O20120723

And a few videos about children with trisomy:

Mieko: http://www.youtube.com/watch?v=cteTcuI-xYI
99 Balloons:http://www.youtube.com/watch?v=th6Njr-qkq0

LifeSiteNews on Baby Isaiah, Katya Sansalone, and Annie Farlow

This up yesterday at LifesiteNews.com:

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, … read the full story at LifeSiteNews.

For the Love of Annie

There’s a recent interview with Barb Farlow up at Bloom–Parenting Kids with Disabilities–by Louise Kinross. It starts with the following background information:

When Barb Farlow learned the baby she was carrying had Trisomy 13, her decision to continue the pregnancy “was immediate and innate, and in complete contrast to what I thought I might do,” says the Toronto mother and engineer. She was told the syndrome was lethal, but through online support groups met families whose children were living with Trisomy 13. “It was very important to us that she not suffer unnecessarily, but we wanted to consider any surgical treatments and make ‘best-interest’ decisions for her, like any parent.”

Barb’s daughter Annie (above) was born without the brain and heart defects common in Trisomy 13, but died at 80 days in 2005 after being rushed to a children’s hospital in respiratory distress. Following her death, Barb acquired Annie’s medical records and learned a “not for intubation” order had been written without consent. “This discovery was like the first domino in a long line of questionable events that left us unclear as to whether our daughter’s death was preventable.” Determined to change what she believes is systemic discrimination against treating children with certain genetic conditions, Barb shares Annie’s story at health-care conferences and ethics talks, with medical and law students, in medical journals and through her work with Patients for Patient Safety Canada.

To read the interview itself, which is informative about how Barb and Annie were treated within the medical establishment, including by medical staff at one of Canada’s leading hospitals for sick children, click here.

Bankruptcy for Justice?

Barb and Tim Farlow elected to have a malpractice suit against a Toronto hospital heard in small claims court, but a judge has ruled the venue is inappropriate. (Photo by Tim Fraser, National Post Files)

On Monday, November 30th the National Post (a Canadian national newspaper) posted an update on their previous coverage of the Farlow court case. Those of you who are regular readers will recall that the Farlows have made serious allegations against Sick Kids Hospital in Toronto. These allegations amount to the claim that doctors at Sick Kids deliberately killed their baby, Annie, in 2005 because she had a fatal genetic abnormality. The decision handed down from Judge Herman amounted to a claim that small claims court was no place for the kinds of charges that the Farlow’s were raising:

DisRespect interviews with Barb Farlow, Sam Sansalone

I’m re-posting this May 15th post, since Disrespect has just re-run an interview with Sam Sansalone about his daughter Katya from earlier this year. The directions below will allow you to get to Sam’s interview, which was re-run on 22nd October; the podcast should be up there for the next few weeks. The two are related not only in that the children have the same genetic condition, but were also treated in similar ways by the same hospital.

Below is the original blog post on the interview that DisRespect did in May 2009 with Barb Farlow and me on Barb’s daughter, Annie Farlow; it includes a transcript of the interview. If you want to see the footage of the talk that Sam gave, referred to in his interview, you can go to the post The Modern Pursuit of Human Perfection: The Full Story and then click on the two Living with Trisomy 13 posts within it. These videos are all now closed captioned and also include transcripts, thanks to Jackie Ostrem

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Many of you have likely been following the case of Annie Farlow (Here is a listing of all our Annie Farlow posts) and were looking forward to listening to yesterday’s radio interview of Barb Farlow and Rob Wilson by Geoff Langhorne. If you are unfamiliar with the case then this interview should provide a succinct introduction to the details of the case in an accessible form. The one thing perhaps unclear in the interview is that Annie was NOT a newborn, but 80 days old, and went in to the hospital 24 hours before her unexpected death. You can also get more from the recently-formed Justice for Annie Facebook group, which you’re welcome to join (it’s a closed group, which means you have to apply to join it), and the Annie Farlow website linked there.

The interview was broadcast on the CFMU (McMaster Unversity Radio) program DisRespect (Here is a little about the show and the program’s host) and is available for listening/download by doing the following:

1. Go to the CFMU website (http://cfmu.msumcmaster.ca/)

On Justice for Annie Farlow

The following letter was sent today regarding the case of Annie Farlow. For more info, see www.anniefarlow.com and the Facebook group Justice for Annie. Those who share the concerns expressed in the letter, especially those in Ontario, are encouraged to contact their MLAs or the Premier about the case and express your concern.

The Honourable Rick Bartolucci
Ministry of Community Safety & Correctional Services
25 Grosvenor St,18th Flr
Toronto ON M7A 1Y6
Tel : 416-325-0408     Fax : 416-325-6067
Toll Free: 1-866-517-0571           2nd June, 2009.

Dear Mr. Bartolucci,

I am writing to you directly in the matter of the case of the death of Annie Farlow, a case with which I believe you are familiar. I am a university professor, a Canadian citizen, and was formerly a resident of Ontario, when I taught at Queen’s University in the 1990s. I have become familiar with many details from the case through my work as the founder and coordinator of the What Sorts of People Network, a large-scale, Canadian-based network of about 80 scholars, teachers, and community organizers with a focus on issues in which disability, health, and technology intersect. I have read and reviewed much about the Farlow case, including much of the correspondence that has passed between the Farlows, the hospital, and government offices, including your own. I have grave concerns about the case, some of which directly concern your Ministry, although they are not yet concerns about the Ministry as such.

While there are many aspects of the treatment and death of Annie Farlow in the country’s leading hospital for sick children that I believe should be of concern to the average Canadian citizen, my reason for writing is to convey to you directly my view that the position that your Office has taken regarding both the decision not to compel the Office of the Coroner to provide the Forensic Audit Report, and the subsequent decision to decline the parents’ request for a disinterment of their daughter’s body, should be reconsidered.

This is a case in which there are major and significant doubts about the cause of the death of an infant while under the care of the hospital, about the subsequent integrity of coroner’s own report, and about what appears to be an unlawful refusal by the coroner to provide information to which the family is lawfully entitled (section 18.2, Coroner’s Act of Ontario).

DisRespect Radio Broadcast: Barb Farlow and Rob Wilson

Many of you have likely been following the case of Annie Farlow (Here is a listing of all our Annie Farlow posts) and were looking forward to listening to yesterday’s radio interview of Barb Farlow and Rob Wilson by Geoff Langhorne. If you are unfamiliar with the case then this interview should provide a succinct introduction to the details of the case in an accessible form. The one thing perhaps unclear in the interview is that Annie was NOT a newborn, but 80 days old, and went in to the hospital 24 hours before her unexpected death.  You can also get more from the recently-formed Justice for Annie Facebook group, which you’re welcome to join (it’s an open group), and the Annie Farlow website linked there.

The interview was broadcast on the CFMU (McMaster Unversity Radio) program DisRespect (Here is a little about the show and the program’s host) and is available for listening/download by doing the following:

1. Go to the CFMU website (http://cfmu.msumcmaster.ca/)
2. Click the button near the top left side of the screen that says “PROGRAMMING”
3. Click on “DisRespect” in the programming grid that appears; you’ll find it at 12pm in the Thursday column
4. A pop-up window will appear. In the left column, just click “14.05.2009” and the program will start playing. (If it doesn’t, you should be prompted to download some free software that takes less than a minute to download.) DisRespect starts a couple of minutes into the broadcast.
5. If you would like to downoad the program to your own computer (useful for skipping past the intro and the compulsory musical interludes) then just click “14.05.2009” and once the program starts playing there will be a new box in the bottom of the pop-up window with a download link that you can simply click (Note that the file is 60MB).

An unofficial transcript of the broadcast follows:

Unofficial transcript from DisRespect, with Geoff Langhorne, 14th May, 2009

Geoff: DisRespect welcomes Rob Wilson, who is a professor at the University of Alberta in philosophy is it Rob?,

Rob: ah, that’s right, Geoff.

Geoff: and coordinator with the What Sorts of People Network in Alberta, and Barb Farlow, who was a mechanical engineer and is now an advocate on behalf of people with disabilities in Ontario. Welcome to the show.

Barb: Thank you.

Rob: Thanks for having us.

Geoff: Ok. Barb, this concern that brought you together with Rob started with an incident in your life that our listeners might not be aware of. Do you want to give us the once over lightly?

Barb: Sure, I’ll give you the brief version, Geoff. My daughter died in August of 2005 within 24 hours of arrival at the Hospital for Sick Children. Annie had a genetic condition that was related to disability. Generally the condition comes with very serious anomalies that are considered lethal, such as severe brain defects. However, like all genetic conditions there are a wide range that exist, and my daughter was mildly afflicted. We knew that we would have difficult decisions to make before she was born and ironically we had many meetings at the hospital, specifically to discuss policies and eligibilities for surgery, and ethics and what would happen if this and what if that because we really needed to understand the medical system so that we could properly manage our daughter’s heath within its confines. Once we were assured of the policies, her rights, the ethics, the matter in which any ethical disputes or dilemmas would be resolved, we placed our entire trust in the system.

Radio Interview on Annie Farlow

Annie Farlow

Tune in to Geoff Langhorne ‘s DisRespect on 93.3 CFMU at McMaster at 12 noon EST on Thursday 14th May to hear a one hour radio interview with Barb Farlow and Rob Wilson on Annie’s case. http://cfmu.msumcmaster.ca/

You can get background on the Farlow case from

• the Facebook group Justice for Annie
• previous What Sorts posts on Annie’s treatment, death, and subsequent events here
• Annie’s website

Please spread the word. The show will be available through the station archive at the above site a few days after it runs. Click “Programming”, then find the show by day and time, then download that particular show.

Civil Rights at Risk in the Annie Farlow Case

For background to this case, see the previous What Sorts posts linked to in this post. You can also join the new Facebook group Justice for Annie to support the Farlows and follow developments.

CIVIL RIGHTS AT RISK: ACCESS TO JUSTICE

Subject: Farlow vs. Hospital for Sick Children et al.

Description: Motion by Hospital Threatens Access to Justice for Infant
Born with Genetic Condition whose Death Involves Disturbing Circumstances

Event Date and Location: May 7th, 2009 at 10:00-12:00 am, at 393 University Avenue, 10th Floor, Toronto, Canada.

The Toronto Hospital for Sick Children has called a motion to request for an order to transfer a $10,000 Small Claims file to Superior Court, where the cost of litigation would be utterly prohibitive. The reason the Hospital has stated the request for the transfer is that the issues involved in the Claim are “serious,” “complex” and are such that “the Hospital’s reputation is in jeopardy.”

The Farlows cannot find a lawyer to defend the case on a contingency basis due to the fact that the costs would very likely exceed any potential award for a child such as Annie with predicted disabilities. Should they lose the Motion, they will have to drop the Claim.

There’s a word for that kind of thing

for Blogging Against Disablism Day thanks to Diary of a Goldfish!

There’s a word for that kind of thing

when a newborn is treated as another pending, tragic statistic because her genetic diagnosis arrives before she does

when hospital staff take it upon themselves to issue a DNR for an infant “with problems” admitted to their care shortly before

when lethal doses of medication go mysteriously missing from a diagnosed infant’s medication cabinet, along with the usually meticulously kept medication reports, shortly before that infant dies

when all a hospital can do is issue an apology for “errors in communication”

when a coroner’s office is unwilling to fulfill its duty to release crucial medical information to family members in the suspicious death of an infant, or to answer basic questions about the case

when we sit by

in memory of Annie Farlow

Chromosomal microarray analysis, newgenics, and Annie Farlow

A recent news item in the Canadian Medical Association Journal by Roger Collier, Prenatal DNA test raises both hope and worries, discusses the relatively new prenatal diagnostic technique of chromosomal microarray analysis, contextualized by the case of Annie Farlow, which we have discussed in the posts What Sort of Death for Annie? and Deathmaking by medical neglect. Some think that Annie’s fate was sealed by her diagnosis of trisomy 13, not so much because of the nature of the condition itself but because of the downstream effects that labeling had on the medical treatment she received (or not). As the article says,

In August 2005, Annie, not yet 3 months old, suffered a respiratory attack and was admitted to hospital. She died within 24 hours. The official cause was “complications of trisomy 13,” but Farlow and her husband still don’t know the details, despite years of inquiry. They do know, however, that someone issued a do-not-resuscitate order without their consent. “I feel that the genetic testing ultimately determined her fate,” says Farlow, who lives in Mississauga, Ontario. “She was treated as a syndrome. She wasn’t treated as a child.”