Breastfeeding with a Disability
By Mary Allison Cook
“It will be fine. Right?”
That was my first thought as I watched the two small pink lines appear. It was not the first time I had expressed this cautious optimism. Beginning college, merging onto the interstate, leaving the dryer running through the night – many situations had created uncertainty for me. Occasionally, my disability caused additional hesitation. I was certain I could complete any task and achieve big goals, but my path to success was not always clearly marked. Pregnancy and parenthood was no different. I was confident in myself, my body, my doctors, my husband and support system, but I was also confident that there were a lot of unknowns. I had several friends with similar disabilities as mine who had babies but none with my exact level of spinal cord injury (T-3), body type, or health history.
Most people facing a vast and murky sea of unknown read books, do research, and educate themselves as much as possible about what to expect. Not me. I am a chronic avoider. I tend to sweep things that scare or overwhelm me under the rug for as long as possible until one day I trip over the rug, land face first in my pile of avoidance, curl up and have a good, ugly cry. The process works well.
One topic that caused me the greatest concern while pregnant was breastfeeding. Will he latch? Will it hurt? Will I produce enough milk? How will I pump at work? How in the world do you use one of those nursing covers? And for a woman whose level of sensation begins to get fuzzy at the boob, my concern was substantial.
"It will be fine. Right?"
On April 20, 2017, my husband and I welcomed a 7lb. 2oz. bundle of joy little boy named John. He was delivered by C-section with ease. After I was sewn up, they wheeled me to recovery, placed his tiny body on my bare chest, and boom, I was a mother.
"Want to see if he's hungry?" the nurse asked.
"It will be fine. Right?" I thought.
I awkwardly placed my arm under his warm, floppy head and slowly brought him to my chest.
I tried again, this time guiding his head with one hand and my breast with the other.
"It's ok,” said the nurse. “You'll have more time to try later.”
She was right. Every two hours I tried. Some attempts were slightly successful, but most were full of frustration and disappointment. I couldn’t get comfortable, my nursing pillow didn’t fit right, and he just wouldn’t latch.
“It will be fine. Right?”
By the time we arrived home, my high strength pain medications had worn off, and I began to notice signs of autonomic dysreflexia (AD) every time I tried to nurse. Common in people with spinal cord injury levels above T-6, I was familiar with AD and was always thankful that my body had a way to communicate pain to me. But this time, I was not so thankful. As the days passed the AD became worse and was no longer exclusive to me nursing. Any time I was around my son I became dyreflexic. I was miserable. By week two I had decided that breastfeeding was not for me, but I could still pump and provide my milk. I pumped and fed and pumped and fed. And I also washed a lot of bottles. It worked. I felt like I was providing for my child; my dysreflexia, while still present, was far less severe; and my child was happy and growing. By week three, my AD had greatly improved. I began to get in a groove of pumping, bottle feeding, and my milk supply began to increase. Things were looking up. One day things were going so smoothly that I decided to give breastfeeding one more try. I made sure John was fully rested and not too hungry. I took some deep breaths, sang some of his favorite songs, brought him in close and boom, he latched! It wasn’t perfect, and it didn’t last long, but it was a start. Gradually with each feeding things improved. He stayed latched longer, ate more, and seemed to enjoy nursing. I began to enjoy it too. By week six, my AD was completely gone, and I breastfed John 95 percent of the time.
Now nursing, or should I say feeding, is my favorite part of the day. Whether I give him a bottle or my breast, I get to shut the door, hold him close and stare at his dimpled knuckles, count his thigh rolls, and wipe the milky drool from his chin. It's magical.
Approaching parenthood is scary. There are so many things to think about, and having a disability can add to the list. While it would have been nice to know that autonomic dysreflexia after delivery is super common for women with a high level SCI, I'm glad I didn't. If I had Googled “breastfeeding with a SCI,” I would have read depressing case study titles like “Breastfeeding by women with tetraplegia: some evidence for optimism” and been too afraid to read the article. Instead I spent my time pondering how long my husband will let me dress our son in smocked rompers and knee socks rather than if my SCI will affect my milk supply. I was also lucky to have a community of moms with disabilities to talk with and ask questions. I was still too afraid to ask about their breastfeeding experiences, but I knew they were raising happy, healthy babies, and that was enough for me.
My first three months of parenthood have been filled with breastfeeding challenges and victories. Finding solutions involved communication with my doctors, trial and error, and support from my family and friends. Although everyone’s experience is different, here are a few tips that I found to be helpful on my breastfeeding journey.
1. Find a comfy spot.
The first few weeks and months into motherhood, you have one main job. Yes, you are there to love and nurture and protect your precious miracle, but really, it's all about the milk. Feeding your baby, especially at the beginning, is time consuming, and at times, feels all consuming.
Between nursing my son every two hours and pumping to keep up my supply, I felt more like a cow than a mom, so making each feeding, pumping, cuddle session as comfortable as possible was paramount. Originally I thought I would nurse in bed during the night, but I found it difficult. The couch was a little better, but our worn out cushions didn’t provide enough support. Luckily my husband and I had splurged on a big, fully upholstered glider for the nursery. This was the place where I could relax, snuggle, and feed my son without worrying about losing my balance, dropping him, or my skin breaking down. The chair was a lifesaver.
Think about what the best nursing setup will be for you, and try lots of options. I learned quickly that most gliders and rockers on the market also swivel. I'm sure this is a great feature for most parents, but I knew a swiveling chair combined with a dark room, sleep deprivation, and a screaming infant would equal disaster for me. Skin breakdown is another important topic to consider. My skin was extra sensitive for many weeks after I delivered. My body was healing from birth, changing from pregnancy and moving in new ways to care for John. If your skin is extra sensitive to breakdown, you may need to purchase a medical grade cushion or speak with your doctor about the best seating options for feeding.
2. Baby knows best.
When I say that I didn't know much about breastfeeding, I mean I didn't know anything about breastfeeding. As I shared my breastfeeding struggles with doctors and friends those first few weeks, they kept talking about my "let down." I was so clueless that I thought “let down” was in reference to my hormones adjusting postpartum. And let's face it, I felt let down about the whole nursing situation most of the time. In addition to my lack of general breastfeeding knowledge, I was so used to my disability and my body, I did not realize how little feeling I had in my breasts until I spoke to other moms without a disability. I just assumed no one could feel her child latch or milk come in. While I was living in my world of ignorance, my brain and body were working together to create solutions to my lack of sensation. I realized that I would watch the pace of my son’s jaw as he sucked and listen for his gulps to tell if he was getting enough milk. I learned from John’s cues that my let down was slower on one side, so I made sure not to start feeding him on that side if he was really hungry and impatient. While I had to pay close attention during feedings, and it took time to learn, my lack of sensation allowed me to connect with him on another level.
It’s easy to simply turn to friends, family or lactation specialists for solutions to breastfeeding, but don’t forget to listen to your baby. His or her responses combined with your body’s natural ability to adapt will help you achieve success.
3. Pump it up.
For a lot of women, pumping is just the worst. I'll admit, it's not very glamorous, but there were some days where my pump saved me from the doom and defeat of nursing. If my son wouldn't latch or I wasn't sure if he was getting enough milk, I could slap on those clear pumping flanges, space out on Instagram, and then see exactly how much milk I had produced. Even giving my son a bottle was heaven sent. For him, a bottle was much easier to take, so we could relax through the feeding, regroup, and try breastfeeding the next time. Bottle feeding was also much quicker, so it gave us time to take a substantial nap in between feedings and wake up ready to try again.
Pumping is also a lifesaver for me when we go out. It is difficult for me to breastfeed outside of the comfy confines of our nursery glider. My first attempt was in the back seat of our compact car in a Wendy's parking lot on a hot summer day in rural Alabama. I don't recommend it. While I can nurse in public, pumping a bottle is so much easier and allows us to stay out for longer periods of time, which is fabulous for my sanity.
Invest in a high quality electric breast pump. Many insurance plans will cover the cost. Even if you don’t use it often, it can come in handy. Pumping can help you increase your milk supply and allow others to feed your child so you can take a nice long nap. It’s a win win.
4. Whatever works best is best.
The world, and especially the internet, is full of opinions. As you prepare for motherhood, be prepared for lots of people to share their experiences and advice. While I am ever grateful for the information I received, I also quickly learned that my experience would be my own unique journey. I had to stop reading top-rated baby gear lists and breastfeeding blogs and figure out what was going to be best for my family and me. For the first few weeks pumping and bottle feeding worked best, then I transitioned to almost exclusive breastfeeding. Now that I have returned to work, my son is taking more bottles. As he grows and schedules change, how and what he eats may change. Working through these phases allowed me to become more flexible, relaxed and confidant in all areas of parenting. It also helped John become open to different feeding scenarios, which is very important.
Your experience with breastfeeding will be different than mine. You may nurse with ease, have difficulty, or fall somewhere in between. Do not stress. Do not let feelings of failure or inadequacy creep in. No matter how you feed your beautiful little babe, you will bond, you will nourish, and you will provide.
And it will be fine.
No, it will be so much more than fine. It will be the greatest thing ever.