AFE Survivor Katy
I am a survivor. My daughter is a survivor. I am one of the unlucky few to suffer an Amniotic Fluid Embolism (AFE) during childbirth. I am also one of the extremely lucky few to survive. I feel both a sense of obligation to document my story on behalf of those women who no longer have a voice, as well as a personal need to share my own thoughts and words before they fade from my memory. It’s quite a story to tell, though I wish more than anything, that it wasn’t mine to share. I also want to have something documented, so that one day, my young children can know the full story and see how much it has impacted each one of us, good or bad. The simple fact is that there is truly no medical reason that I should even be here, alive and healthy, to write this. My own obstetrician said those very words to me a few weeks ago during a visit.
I had a very normal, albeit, anxious pregnancy as I had miscarried a few years prior. I had no reason to believe that anything could or would go wrong during delivery. However, for the last month of pregnancy, I was very vocal about my fear that something was going to happen to me during delivery leaving all three children without their mother. I was constantly asking friends if they’d ever been nervous for their own lives during birth. I’d never felt this way with my first two children. I didn’t know what any of this meant, and I just chalked it up to nerves and hormones.
On January 14, 2013, I had my 39 week pre-natal visit. I’d been feeling great my whole pregnancy, but as of that morning, was beginning to feel some contractions. I was slowly progressing towards active labor and I was dilated. My first two children had been delivered after very fast labors, and my doctor knew that number three would arrive even faster, based on my history. A snow storm was on the horizon, and we live an hour outside of Boston. He recommended that we stay close to the hospital in case I went in to labor. So, we arranged childcare for our four and six year old with my mom and we got a room at a hotel in the city for the night. I was very anxious and remember being very aware of those hugs being so important to me. Those hugs and kisses were so very close to being the last that my two children and mom would have ever had from me. What would their memories have been like of that day? Would they have an image of my face waving goodbye and blowing kisses from the car, or would they remember something else? Would my son even remember me? He was just a tiny four year old. These are the types of thoughts a near death experience leaves you with. Even though I am alive and well, I’ve become fascinated (for lack of a better word) with the “almosts” and the “what ifs”.
We checked into a hotel across the street from the building that my husband and I worked at for years. It was comfortable to be in a familiar place, but I was slipping into a bit of a funk, the pending sense of doom hanging over me. We went to dinner, did a bit of walking to try and progress labor, and watched some Friends re-runs. I did not sleep well, and I did not progress overnight. We went to Labor and Delivery the next morning as planned. We all decided that I’d be induced. This was based on the contractions and being dilated. It was too risky to send us home given the storm, the distance, and the fast labors I had before. This decision has had a significant impact on me because it ultimately saved my life, but at the same time, has also made me wonder if it also impacted the event. While there is no proven medical link, I personally regret my decision to be induced. I was admitted and put on a slow drip of Pitocin and we waited it out. It was a long, boring, uneventful day, but I still had such an uneasy feeling and told my nurse, despite the calm, that I knew this was not going to end well. I told her that I believed I was going to end up with a caesarean. I had no medical reason to believe this would be the case.
My water broke on its own and once that occurred, like my other two, labor progressed incredibly fast. I was given an epidural and spinal (as I’d had with my other children as well). The procedure took quite a while as I experienced some side effects from incorrect placement. My blood pressure and heart rate plummeted to dangerously low numbers. This had occurred with my other two as well, but was easily remedied with medication. This time it would not return to normal. This time, our baby’s also plummeted. She was suffering from Fetal Bradycardia and time was of the essence. I was rushed in for an emergency cesarean. When she was delivered, she did not cry. Her hands and feet were blue. It felt like an eternity before we heard her scream. She is such a little fighter. I was able to hold her briefly and then she was taken to the NICU for observation. It was terrifying and I felt helpless, but I also did not feel right myself. I was so lucky that my husband was with me the entire time, even during the emergency caesarean. Despite the Fetal Bradycardia, she was healthy and is thriving.
Unfortunately, after the birth, things with me never returned to normal. My entire body had broken out into a rash, I was vomiting, and I was blue. Then, all hell broke loose. I was rushed off for a second emergency surgery. I had Disseminated Intravascular Coagulation (DIC), uncontrolled bleeding because my body lost its ability to clot. I was losing so much blood that all of my organs were failing. I was bleeding to death. I have a vivid memory of looking a doctor in the eye (I believe he was the anesthesiologist who was called in after my spinal and epidural placement) and pleading “You can’t let me die, I have two children at home and a new baby girl. You can’t let me die”. My decision to spend the night and deliver in Boston saved my life. Not only did I have a great team of doctors who recognized the signs of AFE, but the blood supply alone would not have been available where I lived due to a shortage.
At this time, I had to have upwards of 30+ blood transfusions and blood product. In order to save my life, a split decision was made to perform a partial hysterectomy to stop the bleeding. (I would later learn that I’d had a hysterectomy about a week into my hospital stay. My health was so poor that this was just a “small” collateral event of the AFE.) A trauma team was consulted with due to the gravity of my situation. My husband was spoken to by my obstetrician about my status and how critical the situation was. The surgery was over 5 hours long and no one was sure I was going to live through it. My frightened husband sat in a room alone during that time unsure of what his future held, whether he was returning home with a newborn and without his wife. He requested that our daughter be brought down to him and they waited.
I survived the surgery, was put in a medically induced coma and was moved to the ICU. My family was prepped for the possibility that I may not be the same person if/when I woke up. I had such significant organ failure that my brain activity was in question. I suffered a seizure while in the ICU post-surgery, everyone was unsure that it would continue to happen.
Miraculously, I did not suffer any neurological damage, and the seizing stopped. I have memories of waking up. I remember seeing the blurry outlines of my husband, my mom, and my brother. I can tell you the pattern of the shirt my brother was wearing. I still hear my mom saying my name and talking to me in a soft, but urgent voice. I heard their voices, I heard their relief, hesitation, and fear. I felt them touch my arm and my hands. I was intubated and medicated, but alert. I was fixated on the little calendar hanging in my room. To this day, this part of my story haunts my husband. It makes me so sad that he feels that way, because there was no way for him to know what I was thinking. I couldn’t speak, but kept grunting and pointing forward. They didn’t know, that in my head I was screaming “WHAT HAPPENED TO ME? HOW IS IT JANUARY 16TH? SHE WAS BORN ON JANUARY 15TH!”It’s painful for me to admit, but I don’t remember wondering about my baby. I don’t even know if I remember that I’d had her. I was so sick.
I was in kidney failure and required daily dialysis. My body was not producing any urine and I was incredibly swollen from all the fluid my body was holding on to. I never saw myself in a mirror, but my limbs and hands were unrecognizable. My nurses would take my weight and write it on a white board in kilograms. One day, I used my phone to do the conversion to pounds and discovered that I was 62 pounds heavier than I was when I was admitted to the hospital. I’m not sure I understood the seriousness of that at the time. I was constantly being poked and prodded with needles. I never felt them despite rarely using my pain medication. I was numb, seemingly in shock. I felt nothing. I eventually had a central line placed in my neck for my dialysis port. Dialysis took hours, and oddly, during this time, I felt most at peace.
I didn’t speak to anyone, I was very withdrawn. I didn’t ask about myself, any of my children, and I was reluctant to see my new daughter. I have also come to understand that I was terrified for myself and my health. I was afraid to become attached to her as I was realizing I wasn’t out of the woods yet. The guilt I feel about certain things will always be with me, even though I understand the cause and know what I was feeling was appropriate for the circumstances. I never wanted to talk to my older children on the phone. I don’t like admitting that, but it was true. They were so little, so scared, and so sad, and always asked when I was coming home. I would feel so frustrated by those calls, because I couldn’t answer them, I was afraid to answer them, and have it be a lie. I didn’t know if I was ever going home. That was the truth.
A few days after her birth, I was moved out of the ICU and up to a medical floor. The second night there, I asked my husband if he could sleep in the room with me (he had been sleeping on the maternity floor). I knew something was very wrong. I was experiencing excruciating abdominal pain. Pain that rivaled what I’d just been through with labor pains. An OB doctor examined me, and determined that there was blood seeping from my c-section wound. I was rushed away for a third emergency surgery. I remember telling my husband as I was being wheeled in to surgery that I was ready to give up, I didn’t want to be there anymore. Each time I was operated on, I waited for that moment when my eyes closed from the anesthesia so I didn’t have to feel afraid anymore. I know I didn’t mean what I was saying, I would never say that, I was just terrified. There was so much unknown. The doctors were extremely concerned that I was bleeding internally, and potentially not clotting again. It turned out not to be the case and the surgeon had a theory that it was old blood pooling under the wound. The surgery opened the wound to remove the blood. The decision was made to leave the wound open in case something happened again. This meant I now required a wound VAC. I returned to the ICU post-surgery, still receiving dialysis and being closely monitored.
At this time, I’d been in the hospital for two weeks. Things were looking up after that third operation and the decision was made to move me up to maternity to spend time with my baby and husband. We made arrangements for my two older children to come to visit the next day and see me and meet their new baby sister. I was transported late at night, and for a brief time, I felt normal again. I was so happy to be at the place I was meant to be the day of her birth and so happy to have my husband there and my two other children coming to see me. The next day, my kind nurse offered to help me shower and wash my hair.
I was unable to walk as my muscles had completely atrophied in the two weeks I’d been there. I was a healthy person and it still amazes me how quickly I lost all my muscles and strength. After my shampoo, I began to complain that I felt short of breath. I knew that I’d been suffering from anxiety from all I’d been through, and I blamed the weight on my chest, and breathlessness on that. My nurse felt that I’d over done it with the shampoo as it had required me moving on my bed quite a bit.
But, once again, I knew something was terribly wrong. I just knew it. The shortness of breath began to get worse just as my children arrived to see me. I’d been so excited to see them, but felt myself getting so fearful and upset, and I couldn’t enjoy the time. I couldn’t breathe. I felt like a weight was on my chest and just felt so out of breath. I had to ask my mom to take them home after just 45 short minutes with them, I was so sad. Just as they left, I was rushed away for a CT scan. I was so terrified laying there in that machine. I couldn’t breathe and was being instructed to do different breathing techniques and movements. I was so afraid to be alone, I knew I was dying. Again.
They discovered a pulmonary embolism and an abundance of fluid in my lungs. When they returned me to my room after the CT scan, things got really bad. I could not breathe at all and was screaming at them that I needed help, throwing my body, which I could barely move on my own, around to get some relief. I watched my husband looking at me so terrified once again and listened to him yelling at the nurses to do something. He was removed from the room and I heard the Code Blue called over the hospital loud speaker and knew that I was in trouble. This was my most terrifying moment because I was 100% aware of all that was happening. I’ve never felt like that and it’s the feeling that can still cause me to react physically with a panic attack. I was literally drowning in the fluid in my own lungs. My own body was killing me.
I was once again intubated, returned to the ICU, and placed in a coma for three full days while I underwent constant dialysis to remove some of the fluid my body was holding on to. Upon waking up, I learned that I was diagnosed with Post-Partum Cardiomyopathy (PPCM). PPCM can happen in during the last trimester or up to 5 months after delivery and happens in about 1 out of every 3000 to 4000 births. The discovery of the clot, and the respiratory arrest may have saved my life or at least saved me from going through yet another traumatic event.
I was now in heart failure. I remained in the ICU for another week while being monitored, cared for, and now being treated by a cardiology team. As strange as it sounds, I wanted to remain in the ICU for the duration of my stay. Each time I left, something happened to me. I came to love my team of nurses there and felt so safe in their care. After another week I was been told that I needed to move to the Heart Failure unit and I was terrified about that. The night before I was moved, I required constant emotional care from one of the nurses who was on that evening. I was absolutely terrified to leave, I was living in fear that I would be unable to breathe again and would not lay flat. She sat with me while I cried and held my hand offering me support. I was so fearful, but didn’t even understand that my heart’s Ejection Fraction was currently functioning at 20-25%, normal is greater than or equal to 55%. No one knew if it would return to normal or if I was going to be living with permanent heart failure. On a positive note, my kidney function had just begun to return, and I was slowly producing urine. This was amazing progress and I no longer required dialysis.
At this pointed I’d been in the hospital for three weeks. It was decided that my daughter needed to go home. I wasn’t able going to be able to see her any longer, because the Heart Failure Unit was in a different building. It was incredible that she and my husband had been able to stay there for three weeks. The amazing maternity nurses caring for and loving her because her mommy couldn’t. They bought her clothes, did her hair, they were incredible. Our families were able to go and see her and snuggle her too.
So, my husband got her dressed in outfit I’d so carefully selected for her weeks before, and got her all ready to go home, alone. He had to make that long drive home with a crying newborn, without anyone there in the backseat, reassuring him that she was ok, still breathing, and doing fine. It’s still so heartbreaking to me that I missed that homecoming. I missed my older children squealing with delight as she was brought through the door. He gave her first bath, and spent her first night at home alone in her room still unsure about what the future held. He did it all with strength and grace, and confidence.
That same day, I was transferred by ambulance to the Heart Failure unit. I remember sitting in my bed and watching people walking outside, thinking, “how can they just be so normal, just going about their day, while I am in here?” I’d just started watching TV and would see pregnant women and felt such a fear for them. They had no clue that this could happen to them. I didn’t know. I’d never heard of an AFE.
I remained in this unit for another week and while my heart function had only improved slightly, my overall health had vastly improved. I was walking on my own, completing physical therapy, so it was determined that I should be discharged. Of course, I wanted to go home, but I was terrified to be away from the hospital, terrified of going into respiratory arrest again. Terrified I was going to die.
After nearly a month, I returned home to all my babies and my beloved dog. I was weak, afraid, and requiring daily visiting nurses, but I was finally home. I could not walk up my stairs without assistance, and could only do them once a day. So, I had to plan my day so I could be upstairs to help with bedtime routines, I’d missed that time so much. I would not lay flat in bed, I was afraid I would stop breathing. Sleeping was difficult for me. I was on a restrictive diet due to my heart failure and also due to being on a blood thinner while the clot on my lungs dissolved.
We surprised our children with my arrival, and that moment I walked through the door and they saw me took my breath away, but for the first time in a long time, in a good way. They were so little, but so aware of the emotions they were feeling when I walked through the door.
Miraculously, within weeks, I was back to driving my kids in carpool, caring for my new daughter on my own, shopping, and visiting with friends. It was crucial for me to start acting normally and for me to appear normal to my older children so that they knew I was back. Driving was a big part of that. It meant Mommy was healthy. A friend gave me a gift card for a coffee shop and going through that drive thru was such a huge moment for me. It’s been four years and I have a clean bill of health. I will be on preventative blood pressure medication for life, but my heart function has completely returned to normal. I am a miracle. I read other women’s stories of their AFEs and am often stunned that I am so healthy. So many are not. So many die. So many babies die.
I survived it all. I wear my physical scars proudly. I continue to work on the emotional scars. I will be haunted by it forever. I will always feel sadness that I missed out on my baby’s first month of life and that I won’t experience that happy, peaceful time again. I am a changed person, there is no doubt. After about nine months of being home, Post-Traumatic Stress Disorder (PTSD) began to rear its ugly head. I completely EMDR therapy for that and am so grateful for that experience. But I will always be affected. I try to separate thinking of my daughter’s birthday as the day I almost lost my life. It’s her day, and my miracle day, but it never ceases to amaze me that during this time, so many memories are triggered by lights, smells, or sounds.
I am in awe at how my husband handled everything. Balancing a very ill wife, a newborn baby, two children at home an hour away, and a job he wasn’t at. The fear, the stress, I don’t know how he did it. I know that I was the sick one, but I often say that it was he, and our families that took the brunt of the after effects of the AFE. I also marvel at how both of our families came together to support both of us. Our children were cared for in our own home, their little routines and structure unchanged. Their safe worlds remained so, all the while everyone around them was managing a constant state of chaos. Our parents, siblings, their spouses, and our extended families and friends, did so much for us emotionally as well helping with the children, housework, visiting our baby, anything we needed. We never even had to ask. We are so grateful for everything they did for us and it will never be forgotten.
My mom and I have spoken about her feelings and memories during this time. I truly cannot imagine being in her shoes during it all. She was a rock for our children at home, and while I cannot imagine what her thoughts must have been like, she was a rock for me as well when she would visit me. I never saw her get emotional or look fearful, just calm and confident which was immensely comforting to me. I know, from our conversations, she felt the exact opposite of what she projected.
I am forever grateful to the medical team at Beth Israel, who saved me and cared for me. Grateful to those who allowed my husband and daughter to stay in the maternity ward without me for three weeks. I recently had the opportunity to return to Beth Israel to thank some of the nurses that cared for me. That was so therapeutic for me.
My sweet little girl is now four years old. She has no idea that her start to life began in such chaos, trauma, and loneliness. Everyone did their best to spend all the time they could with her, but given the gravity of my situation, she did spend a lot of time in the nursery during those three weeks. That breaks my heart to imagine her, so new, so tiny, without her parents constantly holding and loving her. I’ll always feel some guilt that I needed my husband with me, rather than him being with her, but I was so ill. That I made him choose me over her. I’m truly not even sure I thought about that at the time. That pains me.
She was so well cared for by the nurses. They bought her clothes, drew artwork for her, read to her, did her hair, made her headbands, and loved her like their own. Hospital rules were tweaked due to our unique circumstance, and our immediate family members were allowed to go to the nursery without my husband or myself to spend time with her. I remember being told that she’d never remember any of this and that we’d have a strong bond once I was better. I was so worried about that, but can say for sure, that she’s my little shadow and we are inseparable. She’s an amazing little girl and someday, she’ll have quite a story to tell.
I found the AFE Foundation online while researching what had happened to me. I needed to understand what I’d been through and to find others who could relate. Miranda Klassen is one amazing woman, working tirelessly to end AFE, and I am so honored to now be a member of the Board of Directors to help her with that cause. I will always feel a strong dedication and loyalty to the AFE Foundation and take great comfort in giving back and supporting others who have been touched by AFE.
Thank you for taking the time to read this.