On April 8, 2008 my husband and I headed to the hospital full of hope and anticipation for the arrival of our first child, a son we named Van. We were a bit apprehensive, as he was arriving 5 weeks before his due date. Earlier that morning, a routine check-up revealed that I was leaking amniotic fluid and there were signs that I was in labor. My obstetrician told us to check in at the hospital that evening at 8pm if things didn’t progress sooner. We packed our bags and shared our excitement with family and friends. On the drive to the hospital I remember thinking to myself, “I hope I survive this.” This was a fear I had expressed many times throughout the pregnancy that was often dismissed as needless worry. Women don’t die in childbirth in this day and age.
I was admitted that evening, given an Oxytocin (Pitocin) drip to help labor progress and rested through the evening. The following morning, the on-call obstetrician made his rounds, and after his examination revealed that not much had changed, he placed an intra-uterine pressure catheter to measure the strength of my contractions and a fetal scalp electrode to continuously monitor baby Van’s heart rate. My physician decided to wait a bit to see if things would progress.
A short time later, I began to feel anxious and had difficulty catching my breath. The nurse changed my position and called for a respiratory therapist to assist. Van’s heart rate began to show signs of distress and the doctor was summoned back to the room. After a quick assessment, an emergency cesarean birth was called for. As everyone began to prep for the move to the main operating room, I turned to my nurse and asked, “Am I going to die?” Moments later, I seized.
En route to the operating room I suffered a cardiac arrest. Chest compressions were started and within 7 minutes, our precious son was born and my heartbeat returned. Although born with an initial Apgar score of 1, Van quickly recovered and was whisked to the Neonatal Intensive Care Unit (NICU). My husband was anxiously awaiting news after seeing many hospital staff responding to the code blue. He was finally told his son had been born and that the team was still working on me.
Within 20 minutes of Van’s birth, I began to bleed due to uterine atony (failure of the uterus to contract after the delivery) and labs confirmed I was in disseminated intravascular coagulation (DIC) – a condition affecting the blood’s ability to clot). I was transferred to the intensive care unit (ICU), intubated and sedated. The prognosis was not good. Doctors explained to my husband, family and friends that they believed I had suffered a rare amniotic fluid embolism (AFE) and were told of the grim statistics.
Over the next 24 hours I received 16 units of blood products and Recombinant Factor VII. By the second day, my body showed signs of great improvement and I was weaned from the medications keeping me sedated. I slowly awoke and learned of the events that had transpired over the last day and a half. I couldn’t fully grasp the enormity of the situation until two days later when I finally met my son. It is a moment that I am fortunate to remember, as most of my 8 days at the hospital remain a blur. He had the fuzziest hair I’d had ever seen and it was truly love at first sight.
The next several days were busy with what felt like an endless number of tests and procedures. I was only able to see Van once or twice a day. I was utterly exhausted. After 6 days in the ICU, I was transferred back to the labor and delivery unit. Sadly, I was never able to be with Van in my room, nor, was I able to breastfeed. I was discharged home without Van, as he remained in the NICU to work on his feeding. Ten days after his birth we were finally together as a family. The transition home was brutal. To go from near constant monitoring to nothing was drastic. I was left with more questions than answers. The continuity of care was a challenge; none of my care team quite knew what to do with my symptoms or post AFE care.
My health began to decline. My abdomen was swollen and I had very low blood pressure. I had a pain in my back that left me breathless at times. After 5 months of bouncing from one specialist to another, it was finally discovered that my Inferior Vena Cava (IVC) filter (a filter designed to trap clots formed in the deep veins of the legs) had developed a massive clot that completely occluded my inferior vena cava. We later discovered that I have a genetic blood clotting disorder. After multiple interventions, medications and surgeries, this is something I still manage 10 years later.
A few months after returning home, before the recognition of the growing blood clot, I was desperate for answers about this rare and seemingly bizarre complication that I had suffered. I wasn’t well and feared my life would be spent in doctors’ offices. I spent a great deal of time online searching for anything related to AFE. I came across a blog post about a mom and her son who passed away from an AFE the very same week I had suffered mine. Our similarities were striking and I was devastated.
Not satisfied with what I found online, I headed to our local library to read any research articles I could find. What I read astounded me. There was little understanding of the etiology of the condition; it was unpreventable, unpredictable and often fatal. Most of the articles referenced a registry database that had ceased in the late 1980’s. As I sat in the library, it suddenly struck me that I had to do something. Women and their babies were dying in childbirth in this day and age! I was determined to start a foundation to advance research, promote education, and support affected families of AFE.
I had spent years volunteering on boards for local non-profit organizations, and my career in business banking afforded me access to many professionals who could assist in establishing this organization. My degree in biology was finally coming in handy. I wrote down the names of the doctors who had authored the most recent papers on the subject of AFE and began writing letters. I knew we needed their support to make this foundation work. To my amazement, they responded and invited me to meet with them. Three weeks later, I boarded a flight to visit Drs. Steven Clark and Gary Dildy.
My first meeting with the doctors was surreal. A month previous I had sat in a library reading their articles and now I was having lunch with them. We discussed specific types of research and both 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 a 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.
Ten years later, the AFE Foundation continues to be the only organization in the world dedicated to AFE. We have accomplished many objectives, most importantly, our AFE Foundation Patient Registry at Baylor College of Medicine (BCM) in Houston, Texas. It now is the world’s largest database of AFE cases and many papers and abstracts have been published as a result of our findings. Drs. Dildy and Clark continue to champion our cause. We support thousands of families across the globe, giving them access to accurate information and guides to assist them as they grapple with AFE. We have educated thousands of clinicians through speaking engagements and webinars.