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Tonsillectomy and How It Happens That a Girl Could Be “Brain Dead” from this “Routine” Surgery

Earlier this week an 8th Grade girl was declared brain dead after a tonsillectomy surgery to treat her sleep apnea (according to news reports). News outlets, parents, interested parties, and a growing general populace is now asking: “How can a girl be brain dead from a routine tonsillectomy?”

http://www.nbcphiladelphia.com/news/national-international/Oakland-8th-Grader-Brain-Dead-After-236015681.html?_osource=SocialFlowFB_PHBrand

Well,  it isn’t really routine. The phrase “routine surgery” is overused. No surgery is routine for a patient – unless they get the same surgery, performed in the same manner, by the same surgeon daily or biweekly or perhaps even monthly. The surgeon may have routines that he/she follows; but for the patient going under anesthesia and having someone cut, remove, alter parts of the body – surgery is not routine. At best it is what the surgeon who performed my hysterectomy called it: “voluntary trauma”.

So, this young lady endured voluntary trauma to address (what is being reported in the news) sleep apnea.

Many kids go through this procedure every year. When I was on the workgroup that authored the first Clinical Guidelines for Tonsillectomy in Children for the AAO-HNS, we reviewed an enormous amount of research. I discovered that tonsillectomy is the most common childhood surgery; and it is not always necessary.

After reviewing the evidence the workgroup discovered that if you took two groups of children – one group undergoing tonsillectomy. the other watchful waiting the results three years later was the same. So if you have the same result as NOT having surgery three years later, why have the surgery?

Well, each patient is different and their concerns and mitigating conditions are unique as well. Conversations and communication between parents and clinicians are required and need to be ongoing – especially post surgery.

The first time I googled the term “patient safety” in 2006 I found the story of a three year old boy who had died from hemorrhaging post tonsillectomy. He bled all over his mother’s clothes. That was 20 years ago.

http://www.pulseamerica.org/Tstory001.htm

Google today and you will find these stories:

A five year old dies after a tonsillectomy, 2009

http://www.enttoday.org/details/article/2544431/Post-Operative_Pain_in_Children_Undergoing_Tonsillectomy.html

A 12 year old girl in Florida dies after a tonsillectomy , 2010

http://articles.sun-sentinel.com/2010-09-23/health/sfl-tonsils-surgery-082710_1_tonsillectomy-death-common-surgical-procedures

Two year olds in New Zealand in 2003:

http://www.hdc.org.nz/decisions–case-notes/case-notes/child’s-death-from-postoperative-haemorrhage-after-tonsillectomy-(01hdc1500002hdc00077)

Read through these articles to the comments and you will find multiple parents whose children died or were harmed after a tonsillectomy.

These tragedies are a part of the routine in surgery. Parents and clinicians can be best prepared for such scary, unwanted adverse events by communicating openly. Clinicians need not shield parents from what could happen.

For parents whose children are scheduled for a Tonsillectomy they can prepare by reading the Clinical Guidelines for Tonsillectomy in Children. It is designed to be read by clinicians, however it offers a baseline of information for parents/caregivers to ask informed questions. Click here: http://www.ncbi.nlm.nih.gov/pubmed/21493257 In addition parents can download The Empowered Patient app for iPhone or Android for a little extra guidance as their child’s patient advocate. http://empoweredpatientcoalition.org/resources-and-links/decision-support-app

But nothing replaces the value of good provider/parent/patient communication. Talk openly.

 

 

 

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Posted in communication, healthcare, transparency
6 comments on “Tonsillectomy and How It Happens That a Girl Could Be “Brain Dead” from this “Routine” Surgery
  1. Suzan Shinazy says:

    Very important information, parents need to know this. Thank you for a well written, straight to the point blog.

  2. Pat Mastors says:

    Mary-Ellen, such important information. This has happened, per your link, to my dear friend Ilene and, as you point out, to too many other families. Thank you for all you do to advance patient safety.

    Pat

  3. Ilene, your description of “routine surgery” is the best I’ve heard to put perspective around any decision about any type of surgery. Thank you, too, for sharing the clinical evidence regarding tonsilectomies. With your permission, I’d like to post this article on CampaignZERO.

    Thanks for all you do. Wishing you and yours every blessing this year.

    • Oh my… senior moment! I published your name as Ilene… so sorry, Mary Ellen. I was just reading Ilene’s Facebook notes and her name was on my brain. So sorry!!!!!

    • Thank you for reading and sharing your thoughts, Karen. Education saves lives and livelihoods. Please feel free to share on CampaignZERO. Thank YOU for your work to improve safety in healthcare via CampaignZERO.
      ~Mary Ellen

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