AFE Survivor Diana
I vaguely remember hearing about AFE from a movie when I was young and didn’t think something so devastating could ever happen to me. Fast forward to 2016. I was 40 weeks, 4 days pregnant, when it was discovered that my first child, had flipped and that I would need a c-section. The next day, January 5, 2016, my husband and I, along with our parents, made our way to the Hospital to meet our little girl. I don’t remember much from that day, except seeing a shooting star while we drove, my husband yelling at someone driving poorly, and that the Resident drew a little girl on the white board to welcome our Baby Zuzu (who was unnamed). I apparently asked if anyone had ever had an anxiety attack during a c-section, so initially, when I complained of breathing difficulties, they thought that might have been what was happening. Aside from arriving at the Hospital, the next thing I remember is being in the ICU and asking my mom if I could have more children (which I apparently asked over and over again once I was no longer incubated), her saying no, and me turning my head and just being desponded. I don’t remember who told me it was an AFE, I have no clue when I even found out, I just remember the sadness of knowing I would never be able to carry another child. I remember crying a lot. Mostly to the nurses and social worker. I remember trying to not get too upset in front of my family since I knew they were having a hard time. My husband and I hated hearing that I was a miracle. Everyone kept saying it and we would look at each other and roll our eyes. I didn’t feel like a miracle and I was tired of the attention and feeling like I was some sort of attraction. The most relief I got while I was admitted was a reiki session, which was provided by the Hospital. I felt so calm and relaxed afterwards. I also had these little flannel squares, that were brought to and from the ICU and the nursery as a way for my daughter and I to bond. When I got home, I remember rubbing and smelling them for comfort. After 11 days, I was anxious to get home and try to regain some normalcy in my life. I was feeling a little uneasy since I had some spotting but was reassured that I was okay and to rest at home. Unfortunately, I had to be readmitted, via ambulance, within a few hours and required an additional, emergency surgery. At this point, I knew how serious my AFE and DIC was, and was terrified I was dying. Months later, I would cry and have to call my husband everytime I drove the same route the ambulance took (which was my way to work). When I finally returned home, I had a visiting nurse who came out for a few weeks to check in on me. I had family at the house daily and nightly. I initially had biweekly blood draws to monitor my blood counts and weekly appointments for medical and mental health follow up. I remember leaving appointments crying when medical professionals did not understand what I was going through (one saying I wouldn’t have another stroke since I couldn’t get pregnant, another nurse, unaware of what I went through, pushing me about what birth control I wanted and thinking I opted for a hysterectomy at 31). I was overwhelmed. I just wanted to be the new mom, who was exhausted from middle of the night feedings, not from nearly dying. I didn’t understand why this happened to me and spent a lot of time feeling angry and depressed. My feelings were so intense, my body would hurt. Sometimes I wondered if it would have just been easier if I didn’t make it because I wouldn’t have to feel this incredible pain anymore. Everytime I had an ache or pain, I thought something was seriously wrong and I was going to die. My husband wanted to call for an ambulance a handful of times.
I started with a therapist I had previously worked with, however, found it too difficult to get to her office an hour away since I was still relying on others to drive me around. I started with a local therapist and found him to be helpful. I was diagnosed with PTSD and Postpartum Depression. I started EMDR and found my panic attacks while driving had stopped and I wasn’t having such intense anger and depression. I found it helpful to just cry. Mostly in the shower when I could be by myself. I had a baby and my husband to take care of, so some days I tried to ignore my feelings and focus on them, but nights would be the worst. I tried opening up to a few people, but had a couple people who were not supportive, and find myself keeping a lot to myself now. I also asked a few close family members to write about the experience. It was hard to read the ones I got but filled in some missing pieces. I often find myself wondering if going away for a therapeutic, healing weekend might be helpful. I don’t know if I have allowed myself to fully process everything and to let everything out.
Today, I still feel so much. Grief, anger, sadness, anxiety, guilt. I don’t know if the people around me, even those closest to me, truly grasp how I much I am still feeling and how AFE still occupies my thoughts, even 14 months out. I grieve that I didn’t get those first few days of being a Mom and taking care of my daughter. I am devastated that I do not remember meeting my daughter for the first time. Even though we have video of it, it doesn’t replace a memory. I grieve not being able to carry more children. Not a day goes by that the sadness doesn’t creep in and I find myself thinking about what happen and that I cannot carry another baby. I wonder if there was something more my doctors could have done to save my uterus. I feel guilty that I cannot give my husband more children and my parents more grandchildren. I feel guilty that people I am close with worry about being pregnant or those that are pregnant around them. I feel angry that people make insensitive comments, mostly about being pregnant or how their delivery went. I worry how my daughter will feel when we finally tell her about my AFE and how she will feel if she never gets a sibling. I worry something else bad will happen or that I won’t ever feel better. I feel frustrated because I feel like my brain doesn’t work the way it used to. But I also feel so incredibly thankful. It is surreal to hear medical providers and family members recount what I went through, what my body went through and how it has repaired itself. I survived. I am here to raise my daughter. I cherish every milestone with her. I am, relatively, healthy. I have made a bond with a wonderful nurse who took care of me and who we named our daughter after. I am thankful for those who did and do support me, for my medical team, and the selfless people who donated blood that helped to save my life.
With the help of my therapist, my daughter, my family, close friends, and the support of the AFE Facebook group, I know I will continue to grow and heal. I am appreciative of all the work of the AFE Foundation and am hopeful that continued research will put an end to AFE.