November 18, 1999, marks a day that changed my life forever. I was scheduled for a total ankle replacement. I was born with bilateral club feet, this was my 20th surgery and it felt quite routine. At this time, I was a 37 year old wife and mother of three. I went into the surgery with an unsettling apprehension that I struggle to explain.
I met with the anesthesiologist, Dr. Rick van Pelt, and we formulated a plan for general anesthetic with a block which would numb from my knee down. I said goodbye to my husband, as they wheeled me to the pre operative area. Within minutes of the block, I had a grand mal seizure followed by full cardiac arrest. A code was called but they were unsuccessful in restoring my cardiovascular function. The care team opened up my chest in order to hook me up to a cardio pulmonary bypass machine. After an hour or so, I was slowly weaned off, and then taken to the cardiac intensive care unit.
When I realized what had happened, my initial reaction was gratitude just to be alive. My family, however, was quite traumatized. They had experienced a side of the event that I could not understand. For several weeks my husband cried every time he looked at me. My children who were 13, 12, and 3 at the time were each handling it in their own way. The knowledge that I had some so close to losing my life and the people I love was something that I struggled to wrap my head around. I tried instead to focus on my physical recovery and my family’s well-being. I spent the next week or so as I was dealing with minor things such as the pain of having my chest rewired and strangers assisting me in the shower to wash. Everything felt minor considering what I had just been through. During my entire hospital stay, not one staff member referred to the incident. It was like the giant elephant in the room – lurking in the corner with no one daring to mention it. I remember thinking…well, if no one is talking about it, maybe it isn’t such a big deal. The only relevant piece of communication offered to me made no sense. According to the care team, I had had an allergic reaction to the medication, this felt like a lie.
When I was discharged, I was given information on how to care for my chest and set up a visiting nurse. no one informed me of the emotional impact an event like this would have on me or my family. One week after I arrived home, I received a letter from Dr. van Pelt. He acknowledged the impact this must have had on me and my family followed and informed me of how deeply this had affected him as well. He apologized for what had happened and that he believed in open and honest communication. He made it clear that he would be available if I wanted to speak to him further, and kindly included his home phone number. At the time, I thought he was doing “damage control,” and I filed the letter. As I look back I recognize that I simply was not ready to face the reality of what had occurred. They say “denial is the shock absorber to the soul,” and in my case it was true!
I was asked two questions repeatedly — “Are you going to sue?” and “Did you see the white light?” My husband wanted to sue, but looking back I believe he just wanted someone to suffer the way that our family had. A couple of months after the event, I attended the wake of a 14 year old girl, and that was when the emotional flood gates opened. I felt deep guilt for being alive while this child who had had her whole life ahead of her was gone. Now, I had no choice — the emotional impact of the incident that almost took my life was here for me to deal with whether I liked it or not.
I met with my orthopedic surgeon a few months after the incident, and we started to discuss what had happened. As he began to share with me what that day was like for him, he became overwhelmed with emotion and struggled to continue. Seeing a member of the care team express their suppressed feelings towards the matter led me to realize that this event didn’t just affect my family and me but the care team as well.
It was time to make some decisions. The first being, that I would not pursue litigation. My reasoning was quite simple – I was alive. I didn’t have any lingering physical problems, and I thought my family and I had been through enough. The second decision I made was to “get back on the horse” and reschedule surgery. I then called Dr. van Pelt so I could let him know that I didn’t blame him and that I believed this was a truly unanticipated outcome. this conversation which was extremely healing for me and enabled me to move on.
I began to realize that this was bigger than me. More than likely, other patients and families as well as clinicians were not being emotionally supported following unexpected outcomes and medical errors. It became clearer that there were many reasons for this (fear of litigation, the healthcare culture, no infrastructure for emotional support, etc.). I felt compelled to change the system which had failed me. I experienced an incredible sense of responsibility because I was one of the lucky ones to have survived. This h ole in the system needed to be filled.
MITSS was incorporated in June of 2002 out of the crucial need to create awareness and educate patients, families, and the healthcare community about the emotional impact following adverse events. Our mission is “To Support Healing and Restore Hope” to all those impacted by unexpected medical outcomes. We have been proud to offer direct support services through our patient and family educational support groups. We are available through a toll free number (1-888-36MITSS). MITSS has actively sought partnerships with healthcare institutions as our goal is to affect a more compassionate culture and foster an atmosphere of mutual respect as well as open and honest communication.
It has been an incredible journey. I have come to know many others whose experiences mirror my own. I have spoken to hundreds of patients and family members as well as clinicians who have found themselves on the “sharp end” of an adverse event. I understand their pain and frustration with the system which does not yet adequately support them. Their stories serve to inspire me and reaffirm the fact that there is still much work to be done. The fact remains — even in the safest of healthcare systems, things can and do go wrong.
MITSS was founded so that traditional barriers could be broken down. My goal is that others do not face the “wall of silence” that I did back in 1999. We sincerely hope that MITSS can be of service to you.