My name is Amber Melissa Kennedy, I am an advocate for women’s rights and improved maternal health outcomes and I would like to share my stories that have lit the fire of activism in me, with you. In December of 2021, I was diagnosed with mild preeclampsia during my pregnancy with my oldest son. At 36 weeks and two days, I was urgently induced due to extremely high blood pressures and declining labs. At that point I also had developed HELLP syndrome. I had barely started the induction process when my son had some very long and scary decelerations. After being rushed in for an urgent cesarean, he was born pale, floppy and not making respiratory effort. It felt like forever till they could assure me he was ok. I barely got to hold him in the PACU before they whisked him away to the NICU. I had to mourn the loss of so many things I had hoped for, a vaginal birth, the golden hour of bonding, a peaceful birth experience.
It took a lot of time but about two years post partum my husband and I felt ready to try for another baby, knowing that I would be heavily monitored this time, and I knew exactly what to look for this time. Besides a lot of close calls and frequent non stress tests, I had a mostly uneventful pregnancy. I ended up making it all the way to my planned induction at 38 weeks, and I was hopeful for a TOLAC. We arrived at the hospital on July 25th at 8am. The Cooks catheter was placed at around 11:30 am. We had a scare within the first few hours where he had some prolonged decelerations but it ended up being a one time thing. Made it to about 2cm by the end of the night. Contractions with the balloon were incredibly painful. With pain management and rest, the next morning I was dilated to a 5. The doctor removed my balloon and we started pitocin. I got to about a 6 before requesting the epidural. A nurse anesthetist in training tried and failed twice to place the epidural once in L3 to L4 and once in L4 TO L5. The attending anesthetist finally placed it successfully in L3 to L4. It worked beautifully for the first few hours, I was having consistent contractions and only felt pressure but no pain. It was everything I wanted and hoped an epidural would be.
After a while, I noticed I was having recurrent pain that started in the middle of my back, went up through my neck muscles and even down through my arms. The pain felt like all my muscles seized up and wouldn't let go. It took a while each time to recover from the waves of pain. The only thing that helped was sitting as upright in bed as I could. Laying down was like torture. I noticed my epidural starting to only work on one half of my body and the contractions starting to intensify again. I hit the button for a bolus shot of epidural meds and immediately got hit with another wave of pain. I then realized then, it was my epidural causing my horrible pain. They called anesthesiology down to check on the placement. After barely recovering from the last wave of the pain, A male CRNA came around, and without warning and without my consent swiftly hit the bolus and threw me into another excruciating wave of pain. Terrified, I begged him to not hit the button again. He took a look at the epidural and claimed that it was placed correctly, and what I am feeling must be musculoskeletal and not related to the epidural. The contraction pain was getting worse in the meantime, and before I knew it, I was having both contractions and muscle seizures at the same time.
The doctor came in to check me and I was dilated to a 7. I wondered how I could possibly push. Lying down was completely off the table, and I was already in too much pain to think of literally anything else. My doctor waved me off saying that “When it's time to push I wouldn't be thinking about the pain.” I would be “Too busy with pushing to think about”. They had no idea how much pain I was truly in. It was pure torture. 10/10 pain that I actually feared I would die from the intensity. No one could give me answers. Not my midwife, not the anesthesiologist, CRNA’s, L&D nurses; No One. By this point I had been in the labor process for over 30 hours with no sign that it would progress any faster. They tried to remedy the pain by hand-dosing medication (I believe fentanyl) into my epidural. It worked once, so they thought the problem was solved, but it was a short lived victory. The intense contractions coalesced with the muscle pain was truly unbearable. Around 1:00 in the morning of July 27th, I couldn't endure this living nightmare anymore. Through waves of pain I admitted defeat for my VBAC and tearfully demanded a C-section.
However, this unlocked a new fear for me. The anesthesia for the surgery would be put through my epidural. I was terrified of the possibilities. Would it work? Would it send me into hell again? Would I have to writhe in agony, feeling everything while also laying down, being actively tortured by the unrelenting back pain? Because of this I pleaded for general anesthesia. It was a guarantee that I would not have to face the worst case scenario. Both my doctor and my anesthesiologist refused, as they said it was riskier for both me and the baby. The nurse came in and laid me down and shaved me for surgery. I remember pleading through tears “Katie, please please please." Finally, they gave me my pre-surgery oral medications and administered the cocktail of C-section meds through the epidural. Initially, I had a wave of the pain again, but by some miracle of the universe, slowly the contraction and back pain melted away. I was able to tolerate the procedure and my second beautiful baby boy entered the world at 2:35am with beautiful apgar scores and a gnarly cone head.
He latched immediately in recovery as I faded in and out of consciousness, delirious on all of the medications. The next morning, an oblivious anesthesia tech visited my room, cheerfully asking me if I enjoyed the experience of my epidural, saying that the team comes to check on all the moms who had epidurals the day after birth. I informed her of the trials I had faced not 24 hours before, and rendered her speechless. She apologized for my experience and left. Due to the extremely negative impression that CRNA made on me and reeling from the entire ordeal, I requested to speak with a social worker. We stayed until the next morning, when we asked to be discharged early because we desperately missed our first born and desperately wanted to leave the hospital to heal at home. My care team was on board, as I was ambulating well and knew the aftercare process and the warning signs of pre-e very well.
We went back into the ER the day after we got home, because I was having headaches and residual back pain. They checked my vitals and drew labs. My labs were clear, so they sent me home with some pain management options. However, my blood pressure was an astounding 173/103. They discharged me home with a blood pressure of 173/103, acting as if everything was fine! We were home for one full day before I woke up on July 30th with persitant high blood pressures. I was then rehospitalized for another four days due to postpartum preeclampsia with severe features. They gave me Nifedipine to regulate my blood pressure and I endured the hell of magnesium therapy for the second time. All the while, I'm having persistent headaches. My care team was fairly insistent on me getting imaging done to rule out potential risks, but due to the hours long strain my back endured during the birth I was still unable to lay down, not even for a few seconds.
They attempted an MRI once. I tried to lay down and didn't last half a second, I told them I couldn't do it. At this point this was the only thing keeping me from discharge. They told me a neurologist would be in to discuss my symptoms with me. I waited for hours to meet with her, it might have even been overnight. I finally asked my nurse what was causing the delay. She informed me they wanted me to get the imaging done before speaking with her so she could review it. I was slack-jawed. I broke down to my nurse. I told her to please let my care team know it was literally impossible for me to get the imaging, and gently demanded that I speak directly to the neurologist. Finally she was able to speak to me and didn't have concerns. Mind you this whole time I am taking the Nifedipine, who's most common side effect is persistent headaches. When I switched to labetalol days later my headaches melted away.
This process and experience has left me enervated and fragile. I already have OCD and intense anxiety. Now it is coupled with the intense fear of being hospitalized again. Any symptoms I develop, for any reason, I worry that they are indicative of something life threatening. From a cold, to a mild back pain, or a persistent headache. I don't feel safe in my own body. It has failed me so many times. Statistics have not been on my side. I fixate on how else I might be unlucky later in my life and it makes it hard to be present in the now.
I also have an intense and gripping fear of pregnancy now. The thought of risking trauma like that again is almost unthinkable. As a result I'm looking into very permanent birth control, and seriously considering at least a partial hysterectomy so I can have the lowest possible chance of future pregnancy.
Only by talking with Dr. Pian-Smith & Dr. Vogel have I heard of similar phenomena to my epidural experience, but they informed me there's not much we know about the physiology of it, and that more research needs to be done. But they did say it is a well known phenomenon. I am appalled that my care team didn’t have a sliver of an idea of what was happening to me. I have never felt more powerless or terrified in my life.
The trauma of this experience isn't something I would wish on my worst enemy. I am now very passionate about working to prevent outcomes like mine in the lives of other pregnant people. Even if just sharing my story can promote some kind of change I would be grateful.
Thank you, Amber, for sharing your story.
All names and details were shared with permission.
– Dr. Vogel
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