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?”
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.
Google today and you will find these stories:
A five year old dies after a tonsillectomy, 2009
A 12 year old girl in Florida dies after a tonsillectomy , 2010
Two year olds in New Zealand in 2003:
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.