Did you know that May is Maternal Nerve Injury From Childbirth Awareness Month? Before I was pregnant, I had never even heard the term birth injury. Of course I understood that labor would hurt, but I had no idea that being unable to leave my bed afterward was a possibility.
This gaping hole of knowledge seems to exist in the medical community as well. I can’t count how many medical professionals looked at me askance and asked, “How did this happen??” I dunno, Doc, you tell me.
This is my birth injury story.
What Is It, Though?
I still wouldn’t know what happened to me if not for the late author and neurologist Oliver Sacks, who experienced numbness after surgery. When doctors had no answers, Sacks began researching his condition.
He uses the phenomenon of phantom limbs to better explain my nerve and neurological injury.
Phantom limb is a condition that occurs when one loses a limb but can still ‘feel’ that limb. Because the human mind is both extraordinary and a clusterfuck, the ways a person feels their missing limb can get weird. For example, Sacks found records of an armless general describing feeling his hand clenched into his palm on his missing arm. The general could feel the skin of his palm tearing against the pressure of his fingernails; he could feel the blood dripping down his hand. The poor man experienced muscle pain and symptoms of tendinitis in a limb he didn’t even have.
It’s Called A Scotoma
The opposite of “feeling” a limb that is no longer present is being unable to feel a limb that is present. This is referred to as scotoma. Sacks wrote: “As used by neurologists, the term ‘scotoma’ (from the Greek for ‘darkness’) denotes a disconnection or hiatus in perception, essentially a gap in consciousness produced by a neurological lesion. (Such lesions may be at any level, from the peripheral nerves, as in my own case, to the sensory cortex of the brain.)”
All of us have an internal body awareness; that’s how you know to duck in low doorways. That internal awareness gets all messed up when one can’t feel a present limb. Scotoma is a neurological as well as physical injury. As Sacks goes on to say, “It is extremely difficult for a patient with such a scotoma to be able to communicate what is happening. He himself scotomizes the experience because the affected limb is no longer part of his internal body image. Such a scotoma is literally unimaginable unless one is actually experiencing it.”
The Perfect Storm
I’ll never know exactly what led to my scotoma. I can only offer musings and conjectures, scraped together from an online support group. It is flabbergasting that my best resource was a Facebook group dedicated to women facing nerve damage after childbirth. There were so many women like me: age 30 and over, lots of swelling during pregnancy (usually no gestational diabetes or preeclampsia), long, protracted labors leading to emergency c-sections of giant infants. I surmise from these commonalities that several possible factors contributed to my birth injury.
The non-preventable aspects could be my age as a first-time mother (33-just two years from an official geriatric pregnancy) and the whopping size of Big A. He weighed ten and half pounds at birth, huge head and all.
The amount of time I was pushing and my positioning could have been preventable aspects of my birth injury. I pushed for 5 or 6 hours with no labor progress. In the birth injury group, I learned that no one should touch your legs during labor. Like many other women, my injury site was where someone was gripping me.
Just Get Him Out
We saw a different doctor late in the second trimester who looked me up and down and remarked, “You’re tall, with a long torso. Lots of growing room. May be a big baby.”
She wasn’t kidding. Turns out, Big A was too big to descend for labor. So I stayed pregnant. For 42 weeks. Getting more swollen every day. I finally waddled into the hospital for his induction on an early autumn morning. Hours and hours later, after the water breaking, the epidural, and all the pitocin, my son was no closer to making an arrival. My pushing was becoming involuntary.
They prepped me for an emergency c-section. Before cutting my abdomen open and freeing the baby, the doctor traced his finger against my stomach to see if I had feeling. I did, my spinal tap had dislodged and the anesthetic wasn’t working. So they put me completely under, 1950s style. The last thing I remember is the mask going over my face. When I woke up I was in recovery. Josh was sitting in a chair next to my bed holding Big A. It was approximately 4 am the next day and everything was different.
It wasn’t until later in the day that I noticed something was wrong. I couldn’t move or feel my left leg. I told the nurses and they said it was the anesthesia wearing off and that it would return, it always returns. Hours later and still nothing. It wasn’t until that evening that they began to take my complete lack of feeling in my leg seriously. I needed someone under each armpit to walk after surgery. A 5’2″ angel of a a nurse looked up at me wonderingly as my left foot slapped lifelessly against the floor, “you really can’t feel your foot,” she gasped.
I was whisked away to an MRI machine; physical therapists and neurologists began showing up. This was a blurry time of being moved from stretchers to tables, asked repeatedly to flex my ankle or bend my knee. Exams from the side of my hospital bed paved the way to more demanding tasks, like going up and down stairs. They were preparing me to go home.
There is a special kind of pain involved in climbing stairs with a dead leg after recent abdominal surgery. Your dead leg can’t help but dangle in between those torture steps and your lacerated ab muscles can’t help but clench in an attempt to stabilize. Your brain screams in confusion the entire time.
A week later, we were sent home with Big A, a walker, a leg brace, and a portable toilet.
A Whole New Ballgame
I already said everything was different, but can I take a moment to reiterate? Everything was different. A newborn changes everything, of course: schedules, priorities, all that. But now I had to factor my injury into everything as well. Said aloud, “a severe nerve injury in my left leg affected my whole body,” makes sense. Living it was so bizarre though. For example, I couldn’t balance for the longest time. That’s a hard thing to do when ones brain doesn’t register the entire lower quadrant of one of your legs. The first time I took a shower at home, I about toppled over upon trying to rinse my hair. I didn’t have the ability to stop once tipping commenced.
For the first few weeks my incision further complicated things. I couldn’t bend from the waist due to my c-section wound and I couldn’t lift my leg due to my nerve injury. This made everything, but especially pants, very, very, difficult. And painful. My brain, not feeling most of my left leg, thought I was unbalanced. I was always unconsciously flexing my lacerated abs. Thank God for percocet.
Suddenly everything was a giant production. To get upstairs to use the bathroom (I never once used that damned portable toilet), Josh or Mom would have to walk with me to the stairs, take my walker up, and come back down to help me up the stairs. Reunited with my walker, we would then go to the bathroom, where, joy upon joys, someone would have to help me take my pants down. Imagine leaving for all the appointments we had to go to: change Big A, get me to the bathroom. Get Big A dressed, help me get dressed. Gather Big A’s stuff and my walker, cane, and paperwork. Strap Big A into the car seat and into the car, choreograph the long dance that was getting me into the passenger seat.
I couldn’t balance, stand (or sit) for prolonged lengths of time, carry our son, flex my ankle, bend my knee, climb stairs, drive, remain mentally alert, or get around easily. For months. Welcome to new mom hell.
You Can’t Think Cuz Hormones But You Also Just Can’t Think
To accept my injury was nearly as neurological as it was physical was a rough road. I couldn’t focus enough to read anything longer than a Facebook post. My brain just couldn’t process. It took weeks to work my way up to magazines, months to ‘light’ books. Successive questions and intense emotions left me overwhelmed and confused. I tended to mask those feelings with curtness and irritation. Not a cute look.
It took months to realize, let alone accept and plan, for this aspect of my birth injury. Those around me learned to pause between questions, to not attempt too much conversation by the end of the day. I had to write everything down, to plan every activity and meal, lest I forget (something I still practice and am grateful the injury forced me to do). A genuine attempt was made to watch my tone and communicate when I was overtired (ditto). It’s hard to explain, but this general fogginess was more than “mom brain.” This was brain damage.
All Byyyyyyy Myself
Josh had to go back to work and Mom couldn’t stay with us forever. Six weeks in, me and Big A were on our own all day. The hardest part of my birth injury experience was the inability to carry my baby and trying to plan a day and situations around that (with impaired thinking). Before leaving for the day, Josh would attempt to gather everything we would need within my reach. Big A and I set up camp on the couch. When I needed to go to the kitchen, I would scooch myself to the edge of the couch and use the bassinet it to haul myself to standing. Then I would place Big A inside and use the wheeled bassinet as a walker.
Everything remained a giant production but it was just me trying to figure it out with this new tiny baby. Sometimes it was awful. My injury did maroon Big A and myself to the couch and seemed to force time to slow. During that ‘fourth trimester’ all we could do was sit and marvel at each other. We now know that Big A is autistic. I wonder if this beginning was perfect for him. Stimulation kept to a minimum, lots of skin-to-skin contact.
My injured time was an isolated time. We barely left the house, but for appointments (and my sister-in-law’s wedding). I couldn’t drive, even after the c-section stitches healed. It took months to gain enough feeling in my leg to feel confident driving. The ninety days post-injury are such a blur. Seeing pictures from that time is surreal. I’m so glad we made it through. Looking back, I’m unsure how we managed.
And The Best Husband Award Goes To
Josh, man. I shudder to imagine this experience without him. There is stepping up and then there is what Josh did.
In any and every way that he could be supportive, he was. As a father, as a caretaker, as a breadwinner, as the household coordinator, and as a source of emotional support and strength. In the beginning Josh had to do most everything. He walked with the baby when Big A cried; he bathed the baby. Josh did all of the cooking, most of the cleaning. He got us to all the appointments; and walked with me every evening so I could practice. He massaged my damaged calf. My husband helped me dress, shower, use the bathroom, and generally move around.
Josh laughed, cried, planned, commiserated, cheered, and researched with me. He did his absolute best to soothe my fears, run a household, and be a phenomenal new father in uncharted territory. He was, he is, amazing. His physical presence and organizational skills were so pertinent to getting through this time, but his emotional support and strength was almost more important.
He is the best man I have ever known. I knew this before pregnancy. But my birth injury experience brought this fact into sharp relief.
I simply decided I didn’t need my dumb ass left foot to walk. Never focused on trying to make it feel, I just dragged it along with a dogged, ferocious intensity. I walked everywhere, as soon as I could. Angrily towing a walker and then a cane. Mornings, I laid on the floor and did Pilates. Don’t need an uncooperative leg to work on one’s core. Evenings were soon filled with jumping and balancing work.
I treated my unresponsive leg like a naughty child. Forcing it to participate in what I knew was best for it, ignoring its’ tantrum. Ooh, but I was so mad at it. Anger is a comfortable emotion to me, and on top of the confusion, it was a heady cocktail. One that could fuel many hop and squats.
It was Josh who pointed this out to me. He described an interaction with a well-wisher at his job, “I was telling them how now you’ve decided you don’t need a left foot to do jumping jacks. Just like you decided you didn’t need it to walk. It’s an amazing thing to see.”
That’s just kinda always been my vibe; my will is formidable. It also speaks to the minds’ ability to influence the body.
If You’re Reading This From A Hospital Bed after a Birth Injury
If you’re experiencing numbness after labor, a surgery, or other medical procedure, here is my advice:
- Start tossing around the word scotoma right away
- Try to stay in hospital as long as you can, getting as many tests as your insurance allows
- Don’t have insurance? Freaking out? Ask for a social worker
- Get all the physical therapy
- Do extra: climb another flight, ask for more exercises, do as much as you can at home
- Try to coordinate help with running your household for the next few weeks
Being a new parent is extraordinarily difficult. There is a reality to living with a newborn that is rarely represented in sitcoms or on social media. Navigating that territory with a birth injury, rare condition, postpartum depression, etc is an added challenge that is even more rarely talked about. But, statistically, there are tons of us! We should be talking about it and doctors should join us.
Tell me about your birth experiences in the comments below. We can start talking about it there. Please share this article and spread awareness.