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Stephen Huntington Marathon Fund

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Read Stephen's Story:

 

My wife was born in the late 1980’s, to a father who was not present in her life. Her mother knew that the father had tested positive by muscle biopsy for malignant hyperthermia as well as his father and his two sisters. My wife grew up safely, labelled as “possible malignant hyperthermia” and was registered with MedicAlert Canada.

 

In 2004, she underwent her first surgery, a breast reduction at the age of 15. Although she was known to the hospital and the hospital took what they thought were appropriate steps, she suffered a reaction post-surgery. She was scheduled first thing in the morning and she was told that they had flushed the system. They used the appropriate alternative anesthetic as well. After the surgery, which took much longer than expected, my wife had a hard time waking up and her heart rate was accelerated as well as her breathing. The medical staff order a blood gas plus various other blood tests which showed acidosis, elevated CK among other abnormal results. She was treated accordingly and the anesthesiologist spoke to her mother and told her she would not require a muscle biopsy because she had suffered a in vivo reaction.

 

Since then, my wife has had three pregnancies and two caesarians. We constantly repeated her condition to medical staff, met with the resident anesthesiologists and still always worried someone would not take us seriously. We felt pressured into a birth plan with our first born that we were not comfortable with that required an early epidural, for “preventive” measures that led to a caesarian. We were told during her second pregnancy to not opt for a vaginal birth after caesarian because of her higher risk of malignant hyperthermia if it were to be another “emergency caesarian”.

We now have three beautiful children that currently carry the label of “possible malignant hyperthermia”. Our oldest has undergone two ENT surgeries where she was the first in the morning to enter the OR and always takes longer than average to wake up, due to the IV anesthetics. These are always very stressful moments for us as parents.

 

As much as we would love for our children to just have the genetic testing done, it was discouraged because my wife did not have the official testing done and is not in contact with her birth father, so it is impossible to coax him into having him tested as “patient zero”.

 

My wife and I hope that as research advances, better determining techniques are developed so that our children would not be required to undergo the biopsy and feel confident in the diagnosis they receive as well as researching alternative medicine that would diminish the risks.


$220
22.00 %
$1,000
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