November 18, 1999, marks a day that changed my life forever. I was scheduled for a total ankle replacement. As this was my 20th surgery, it didn’t seem a big deal to my family, friends, or me. The reason for most of the surgeries was the fact that I was born with bilateral club feet. At the time, I was a 37 year old wife and mother of three. Everything was as it always had been except for an apprehension I had about this particular surgery that I couldn’t 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. This would help with post operative pain management. I said goodbye to my husband and went to the pre-operative area where the block was performed. The block had been delivered, and within minutes I had a grand mal seizure followed by full cardiac arrest. They called a code but were unsuccessful in restoring my cardiovascular function. Fortunately for me, there was a cardiac suite ready for another patient, and they were able to bring me across the hall and open my chest to hook me up to a cardio pulmonary bypass machine. This all happened with thirty five minutes of the onset, and after an hour or so on bypass I was slowly weaned off. I was then taken up to the cardiac intensive care unit.
When I realized what had happened, I was so grateful to be alive and felt extremely fortunate knowing that most people wouldn’t survive an event like this. My family, however, was quite traumatized. My husband cried every time he looked at me for several weeks. My children who were 13, 12, and 3 at the time were all dealing with it differently. The idea that I was so close to losing my life was something I couldn’t emotionally deal with at the time. I tried instead to focus on my physical recovery and my family’s well being. I spent about the next week or so in the hospital where there were a few complications but nothing major. While in the hospital, I was dealing with minor things such as the pain of having my chest rewired and strangers assisting me in the shower to wash. Considering the fact that I was alive, I kept thinking this was nothing. I had one conversation with someone who said I had an allergic reaction to medication, but this didn’t make any sense to me. 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.
When I was discharged, I was given instructions on how to care for my chest and information regarding a visiting nurse. But, 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. In the letter, he said he was glad to see I was discharged and doing well. He acknowledged the impact this must have had on me and my family while letting me know that this event had affected him as well. He said he was sorry for what had happened and he believed in open and honest communication. He also said that he would make himself available anytime I needed. He included all his contact information along with his “home number.” At the time, I thought he was doing “damage control,” and I filed the letter. I know today that I was not ready to deal with it. They say “denial is the shock absorber to the soul,” and in my case it was true!
The first several months I was asked two questions constantly -- “Are you going to sue?” and “Did you see the white light?” There was an assumption by most people that I would sue. 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 a good friend’s fourteen year old niece’s wake, and I believe that was when the emotional flood gates opened. I felt so guilty for being alive while this child who had had her whole life ahead of her was gone. Why did I get to survive? Now, I didn’t have a 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.
Since physically I looked like I had prior to the surgery, family and friends assumed I should be over it by now. In hindsight, I realize that they didn’t understand (nor did I) that I hadn’t dealt emotionally with the event up until now. I felt as though I was falling apart. I met with my orthopedic surgeon a few months after the incident, and we started to discuss what had happened. He began to share with me what that day was like for him but was unable to continue because he became too emotional. It was then that I realized this event didn’t just affect my family and me but the healthcare providers as well.
A few months later, I didn’t want to feel like this anymore, so I made some decisions. The first was that I was not going to pursue litigation. My reasoning was quite simple – I was alive and didn’t have any lingering physical problems, and I thought my family and I had been through enough. The thought of a lawsuit that would drag on for years was not something I wanted to put myself or my family through. The second decision I made was to “get back on the horse” and reschedule surgery. The next thing I decided to do was call Dr. van Pelt and ask him for coffee so I could let him know that I didn’t blame him and that I believed this was a truly unanticipated outcome. I also needed to know how this had impacted him because it had a profound effect on me. Dr. van Pelt and I ended up having a telephone 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. I came to know first hand that there was a large hole in the healthcare system which 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 effect 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 would not encounter the “wall of silence” that I did back in 1999. We hope that MITSS can be of service to you.