Stephanie Jude Kuleba
for the
Awareness of Malignant Hyperthermia
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Voice for Change


 
May 02, 2008 – Tom Kuleba (Dad)
 
As of this writing it is 6 weeks since Stephanie’s death.  As expected, the grieving process does not get easier.  The void in my soul, and the feeling of fear that I live with daily is unspeakable.  The loss of Stephanie Jude’s life has touched thousands of people and families across this country and the world.  I want to express my most sincere appreciation to those who have reached out with prayers and messages of sympathy and hope  for Stephanie, our family, and friends.  These expressions of sympathy are truly a tremendous support for us.
 
Without seeming cold, I need to express the fact that I am a horribly grieving father; however, as a realist in life, I truly understand that too many events occur daily across this country and world in which many different circumstances cause untold suffering for other persons and their families.  Why did Stephanie’s death receive and deserve the type of media attention that occurred?  I do not truly know the answer to that.  I do know that we as a family did not cause it; quite honestly we couldn’t believe it.  Our only desire was to be left alone to have the time to honor our daughter’s life and provide her a respectful, dignified ceremony with our family and her friends.  
 
When we were told that just about every major network wanted to interview us regarding Stephanie’s untimely death, we were in disbelief, but knew it was something we had to do.  You see,  during Stephanie’s struggle for life, and the events that immediately followed her death raised horrific flags that something was not right.  We had to act accordingly.  Specific facts that we are aware of regarding the events that lead to Stephanie’s death cannot be discussed at this time, however, there is something much more important than our personal circumstance that needs to be told!
 
The Danger’s of Cosmetic Surgery and the setting in which they are performed!
 
It appears certain that Stephanie Jude’ loss of life resulted from the onset of a rare genetic disorder called Malignant Hyperthermia (MH).  I believe that this anomaly is not as rare as it is unreported.  This event is caused by the administration of inhaled aesthetic gases used during General Anesthesia (GA) which if you are (MH) susceptible, triggers muscle contraction resulting in the release of potassium into your blood which will result in cardiac arrest, organ failure and death if not responded to appropriately under specific guidelines, along with the administration of a drug called Dantrolene.  Stephanie’s surgery was performed by a Board Certified Plastic surgeon accompanied by a Board Certified Anesthesiologist at an Accredited Surgical Center (ASC).  One would think that they would and should be prepared for any emergency event that could occur? 
 
This is the major issue!  With the increasing popularity of cosmetic surgery, it has become impractical from a scheduling standpoint and a profit vs. cost standpoint for surgeon’s to routinely perform these elective procedures in hospital settings where the utmost regulations, pharmaceuticals, equipment, qualified physicians and staff exist.  As a result, these elective cosmetic surgical procedures are almost exclusively being performed in out patient settings such as doctor’s offices, surgical suites and ASC.  Because of the elective nature of these procedures they are normally paid “out-of-pocket” and are not covered by insurance companies or programs like Medicare and Medicaid which results in no incentive for these regulatory agencies to properly regulate “minimum standards” within these facilities.  In order to establish credibility, the existence of privately held “Accrediting Organizations” have been developed which serve to set forth accountability for doctors and their practice facilities to adhere to “medically accepted” guidelines, practices and protocols.  I believe that the adherence guidelines to maintain accreditation status are weak and are largely self-supervised and are giving the public a false sense of security with these facilities'emergency readiness.  It is my belief that the industry is monitoring itself and the decisions that are being made in their normal course of business revolves around profitability and less around  patient safety.  They are becoming production facilities with focuses on the amount of procedures that can be performed daily and the cost cutting processes that can be employed which affect their bottom line.  I am not saying that every facility will fall into this description, however, how do you know for sure which do?  In the case with our experience with Stephanie, all their marketing and credentialing indicated this facility was 100% qualified and that they would be prepared for any event?  I feel certain Stephanie left that ASC facility deceased and only through drugs, life support combined with her strength and youth was she able to maintain any minimal heart beat and life for the hours to come.
 
I know that many will say that for the thousands of procedures that are performed in these facilities each day, how many occurrences of complications or even death occur?  If I turn the question around and ask how many preventable bad occurrences or deaths are acceptable?  That is the real question.  From what I have learned, the use of General Anesthesia (GA) with MH triggering anesthetics is not necessary to be employed for most cosmetic surgery procedures, there are alternatives.  It is the ease of use and the reduction of time in controlling the state of anesthesia that is favored by Anesthesiologists.  In addition to the known risk of MH, other complications with GA exist.  It is my belief that facilities that employ the use of General Anesthesia should be governed by more that just an “Accrediting Organization”. The enforcement of regulations should be the same as are required for hospitals.  I believe that this issue needs to be addressed at the state level and that new laws and enforcement are required that are subject to the same standards as hospitals and that will require crisis training, proper staffing, and random inspections to insure compliance.  Those that do not comply get shut down.  After all, we do it for our restaurants and other entities where public safety is considered.  Florida is ahead of most states with enforcement of the accreditation process for ambulatory surgical facilities that employ GA, but it is still not enough.  As mentioned earlier, the increasing popularity of cosmetic surgery with today’s TV shows, plastic surgeon’s marketing campaigns that offer competitive discounting, available payment plans, tend to illustrate this area of medical practice as too routine and without risk.
 
Public awareness of the dangers of MH, General Anesthesia and the risks associated with the current ambluatory surgical system needs to be communicated and voiced to others and your own medical professionals.  Let them know you’re aware of the risks and have concerns, ask the right questions, learn more about MH, anesthesia, your surgery center, and make them explain in detail the informed consent form that you are required to sign prior to your surgery.  Ask them about Malignant Hyperthermia and if they are knowledgeable to treat and prepared with the drug Dantrolene.  You may not get a second chance!
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