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Epilepsy Blog Relay: Postpartum care and epilepsy

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Maureen’s Story

At my very first appointment, only 8 weeks pregnant, my OB asked, “What are your seizure triggers?” Stress and sleep deprivation. She gave a nod that said, “We’ll get through this.”

Regardless of epilepsy, I always knew that pregnancy and labor were going to be challenging. As difficult as pregnancy and labor were, postpartum care is where found the least support from medical professionals.

Labor

On Saturday, June 29th, my contractions began. On Sunday, June 30th at 11:23pm, my healthy, beautiful baby boy was born. It was a long labor, over 24 hours. It was intense, beastly, beautiful, and empowering all at the same time.

I felt an overwhelming amount of love as my baby was placed in my arms. It’s hard to describe, but it’s the type of love that you can physically feel warming your chest. I had the instinctual reaction of bringing him close to my chest and kissing his head. I felt like he had always been a part of my life.

Almost immediately after the birth, they dimmed the lights so I could nurse and the team of amazing nurses had dispersed before I even had a chance to thank them. My nerves started to calm and the pride of what I had accomplished kicked in. I just brought a human into the world! At the same time, the lack of sleep became increasingly noticeable.

Postpartum Care

My bed was wheeled out of labor and delivery to postpartum an hour later. My sleep deficit was becoming evident through hand jerks. I knew it was time to close my eyes but all of my soul wanted to simply hold my newborn close. As my hands started to twitch, I felt inadequate knowing that in the first hours of his life, the safest place for him to be was out of my arms.

Heartbroken, I called the nurse in and asked her to take my baby to the nursery. She raised her eyebrow and told me “mother’s don’t send their babies to the nursery these days. It’s healthier for baby and mama to stay together.” I whimpered that I have epilepsy, a seizure disorder (in case she didn’t know), and sleeping right now was a must and taking him to the nursery was a must. Her lip curled as she rolled my newborn out of the room. My body was starting to flop and twitch so I blinked my guilty tears away and leaned back into my bed. I fell asleep the moment my head hit the pillow.

Nursing and Epilepsy

It wasn’t long before another nurse came back with my hungry baby. Thankfully the 2 hours of sleep had recharged my batteries just enough that I confidently hugged him close to me to nurse. Again, I wanted to snuggle with him for hours but I could feel my body betraying me once again. After what seemed like the fastest hour of my life, I called the nurse to take him back to the nursery. Similar to the previous nurse, she advised me it was best for baby and mother to remain together. These comments were starting to get annoying! I was tired and didn’t want to have to repeat myself every time a new person came in. Again, I informed her about my seizure triggers, and without a hint of empathy, she turned one her heels and sped out. What was with these nurses? I started to feel judged as a mother. Did these nurses have no empathy for my situation? Or was I crazy be thinking this at all? Or maybe I have postpartum depression? I had so many questions but I reminded myself that to have my baby back in my arms, I needed to rest first.

Not even three hours had passed when a clearly irritated nurse burst threw the door and flipped on the lights. “Don’t you want to feed your child?” she scolded. I was caught off guard by her aggression. “Yes, of course I want to feed my child.” They think I am a monster, I thought. The nurse continued “the nursery is for premature and sick babies, and your baby is full term and healthy.” I had no reply. I was too tired to think and I started to wonder if I was actually being selfish and was a horrible mother. My child wasn’t even 24 hours old and in my mind these nurses had already made it clear they thought I was making bad choices. Had no other mother requested her baby be in the nursery? Right as a longwinded apology was on my lips, my partner stepped in to defend my choices and asked the nurse to leave.

Epilepsy Shaming

The negative energy wasn’t in my hormonal head! I was actually being shamed! Surprisingly, I was grateful to have this feeling confirmed by my partner. As my confidence returned I reflected on my experience and was appalled by the way I had been treated. Two days later I was wheeled out to my car without a smile or word of congratulations.

4 months later and I am still appalled! My health was dismissed in the most challenging days of a new mother. I am sharing this experience so other women don’t have to go through it. I will never excuse the nursing staff completely, however I think that being more communicative would have helped.

My recommendation for mother-to-be is to create an epilepsy info sheet. Make hardcopies for all staff! In your info sheet explain the basics of epilepsy. Give your seizure history, medications, and triggers. Put your triggers in bold! Unrealistically, I had expected nurses to understand epilepsy, but the truth is no one knows it all (not even nurses!).

What’s your experience with childbirth? Have you ever had a medical professional dismiss your health?


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

Maureen Knorr
Follow Maureen Knorr:
I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy!

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