August 25, 2008
Exactly six years ago I boarded a flight from San Diego to Salt Lake City. As a new mom, leaving my only child of 4 months overnight for the first time was brutal, especially given what we had been through during his birth. The ever-present “what if…” continued to play like a broken record in my head. Physically, I was a mess. I still carried wounds from the delivery; I was swollen, out of breath, and my mind was foggy. I didn’t know at the time, but I was also walking around with a sizeable blood clot that would soon shut down circulation to my heart. How on earth I managed to fly, rent a car, and drive myself around an unknown city (without the helpful directions from our good friends at Google) is a bit of a mystery. I couldn’t tell you where I stayed, what I drove, what I ate, or any other facts about my 24-hour stint in Salt Lake City other than IT CHANGED MY LIFE.
Let me back up a bit. A month prior to this eventful trip, it was my birthday, and there was nothing material I wanted or needed. When asked by my husband what I wanted to do to celebrate, I requested a few hours to myself to go to the library. I spent hours combing the Internet for articles related to the condition that nearly took my life just a few months earlier, amniotic fluid embolism. Everything about it confused me. My degree in biology and chemistry did little to prepare my mind for this enigma. I printed the research papers and diligently highlighted what I thought was the most important information, as I knew I would retain very little that I was reading. I noticed two patterns, the papers were either written by or contained quotes from 3 doctors: Steven Clark, Gary Hankins, and Gary Dildy III and none had been written in nearly a decade.
I gathered the articles and headed to the grocery store nearby where I proceeded to buy a spiral notebook. I had an idea and I needed to write my thoughts down before I forgot them. I sat in the car and wrote every thought that came to my mind. I even used the brainstorming bubbles I had learned in Junior High…if only I could remember that teacher’s name I would thank them! I drove home with such determination. I was going to start a foundation to support families affected by AFE and spur clinical research. I couldn’t wait to tell my husband, family and friends about the AFE Foundation! My husband, in true form gave me a hug and said okay. Neither of us knew at that moment what, how or where the journey would take us.
The next day I got started and drafted a letter to send to the three doctors whose names appeared in many of the articles. They were the experts. I was just a passionate mom. I knew we would need their buy-in if this foundation was going to work. My career in sales prepared me for the gatekeeper whose job was to weed out sales calls like mine. Except, when I called, the “gatekeeper” was a kind, friendly woman who happily gave me their email addresses. Wow- this was going really well! I sent the letter by email and truly didn’t expect to hear back. The next day I received a call from Dr. Dildy. In my letter I had thrown out the standard sales pitch, I’ll come to you and bring you lunch if you will just give me a few minutes of your time. Dr. Dildy and Dr. Clark ran a maternal-fetal medical practice together in Salt Lake City. It was July and I expected the timing would likely be late fall when our schedules lined up. I suggested November as I had a lot to do to get a foundation up and running. Dr. Dildy suggested a few weeks! I could barely contain my excitement and wanted to reach through the phone and hug him. Shortly after I got off the phone I realized how much work needed to be done before I set off for Salt Lake. Logos, websites, corporate documents, and business cards were a must. I worked like mad to get it started and literally received the business cards an hour before I left for the airport. I managed to get through the tears as I said good-bye to my family and headed to the airport. I got to Salt Lake and spent the evening perfecting the vision, mission statement and strategic plan that I was presenting the next day.
The next morning, I got to the hospital where their offices were located. I couldn’t help but notice the knots in my stomach of being back in a hospital and passing countless pregnant women on my way up the elevator. I wanted to warn them but then realized I would only scare them. I was nearly in tears as I sat in the lobby and waited my turn. I was greeted by Dr. Dildy and headed with him to his office to meet Dr. Clark. I couldn’t believe a month ago I sat in a library reading their articles and now I was having lunch with them. We scheduled a half an hour for lunch. Close to when our time was up, Dr. Dildy excused himself. Moments later he came back and said he’d cleared his schedule for the afternoon. We spent the afternoon discussing AFE and the need for greater research, education and awareness. We discussed specific types of research and both he and Dr. Clark treated me like a peer. They were supportive, encouraging and honest. As the day came to an end, Dr. Dildy walked me out to the parking garage and said how important the foundation would be to families and to research. At that moment I knew I could never give up on this endeavor. Tears ran down my face as I hugged him good-bye.
August 25, 2014
Six years later, the AFE Foundation is and continues to be the only organization in the world dedicated to supporting families affected by AFE while raising awareness, education and spurring research. We have accomplished many objectives: most importantly our AFE Foundation Patient Registry at Baylor College of Medicine (BCM) in Houston, Texas. Drs. Dildy and Clark joined the team at BCM and have championed our cause. We are privileged and honored to work with such remarkable human beings.
Our registry is now celebrating its first year and we are hard at work inputting the data we have received to date. It would not be possible without all of those who supported this endeavor financially and those who submitted a case to the registry. Research such as this requires many staff and comes at a significant cost. It will continue as long as we are able to fund it.
Today, as I reflect on our beginnings, I remember that trip that started it all. Please join me and the board in wishing the AFE Foundation a Happy 6th Birthday!
Warmly,
Miranda Klassen, Founder
AFE Foundation