Please Listen to Me

I may not know much about babies, but I do know that an exclusively breastfed baby should not become constipated with pale, greenish white poop.

This is the first line I wrote, yesterday, during a storytelling workshop I attended. My friend Christine sent me information about the Portland Story Theater's classes and encouraged me to consider participating. I registered nearly immediately and, two months later, the day was upon me.

Using the word Writer when talking about myself took years of internal debate. I hesitated because I don't have a published book, or much of anything else, and it felt fraudulent. Storyteller, however, I embrace with ease; I can no more avoid telling tall tales and sharing often long-winded descriptions than I can avoid breathing, as long as my audience is no more than a few people. Add even a couple of extra sets of ears and the connection between my brain and my tongue bursts. Completing sentences becomes a Herculean task, which makes me sweat, which makes it even more difficult to talk, which makes me blush... it isn't pretty. 

Both in my professional life and my personal life, however, I am certain storytelling is a missing piece of the humanity puzzle. We all share a common need to be seen and heard, to experience connection, but opportunities to do so become fewer and fewer. I registered for the session in an attempt to overcome the disconnected brain and tongue syndrome. After yesterday, I think I am on the right track.

A dozen or so people listened to roughly (improved today by the feedback I received from them) this story, one I've been trying to figure out how to tell for years:

As a young mom, 21 when Steven was born, I became accustomed to funny looks and learned to expect the hushed comments from strangers about girls having babies too young.

Holding a five-day-old Steven

Holding a five-day-old Steven

What I didn't expect was a pediatrician seemingly unwilling to listen to me because of my age. I took Steven to him three times, telling him I knew something wasn't right during each appointment. He nodded, told me I shouldn't worry so much, and sent me home with orders to let Steven drink electrolytes every once and a while, for energy. Meanwhile, Steven became even more listless, his eyes turned dull, and he continued to lose weight despite what must have been a lot of poop lodged inside of him.

One day, I arrived at my sorority house after class, where a sorority sister had been babysitting for me. Steven was lying on a blanket, on the ground, asleep on his stomach. My friend told me he hadn't protested when she placed him on his stomach. He hated being on his stomach. Something was really wrong.

Skipping classes for the rest of the day, I drove the hour or so to the pediatrician's office. I did not call ahead because I did not want hear, again, it was all in my head. I walked inside with my five-month-old baby and told the receptionist I wasn't leaving until someone helped me determine what was wrong. My once-strong voice had been lost somewhere between getting engaged, getting married, and becoming pregnant; with a deep intuition that Steven's life was on the line, this was the day I found my voice again.

Steven and I were lucky that day because his normal doctor was off; we instead spoke with two women, also pediatricians, with a willingness to actually listen to my words. I walked them through what had been happening and shared my frustration. I also said that while I am sure they hear people make comments about afflictions they think they might have based on a television show, I wondered if there was any way he had botulism. On a recent episode of the show ER, a baby with very similar symptoms was a part of the story. On the show, the baby's sister was secretly feeding him honey (botulism is the reason we are cautioned to avoid honey in the early months of a baby's life) and I knew that wasn't a risk for Steven but otherwise, the symptoms matched nearly perfectly.

Rather than dismissing me as a crazy, young mom, the pediatricians worked through a process of elimination and decided botulism might actually be possible. They sent us to Doernbecher Children's Hospital for tests. We had to find our way through the maze of roads on what is known locally as Pill Hill, where a collection of independent but affiliated medical facilities sit above Portland, the layout of the buildings anything but logical. I vaguely remember parking in a spot I wasn't sure was allowed to use and the blur of trying different doors, unsure of how to get where we needed to go.

Soon, I sat in a room with Steven on my lap while a gaggle of doctors swarmed around us and poked needle after needle into his lethargic arms and legs. I comforted him by letting him suck on my finger but he didn't really need it because he did not cry.

I heard them explain that infant botulism is most often caused by a bacteria carried in spores found in soil and dust. The bacteria paralyzes the nervous system in a baby, just like it paralyzes the muscles in celebrity foreheads, and because he was mostly breastfed, I didn't know his sucking mechanism was no longer working and my milk had dried nearly completely. His was an advanced case, since it hadn't been caught early, and the tests were to determine the extent of the damage, and in particular, if he showed any signs of brain damage.

We moved to a room to wait for more tests and more information. As we walked through the halls, parent after parent met my eyes with empathy. They silently welcomed me into a club no one wants to join. As we continued to wait, word about a possible case of infant botulism spread and a steady parade of medical students asked to learn more about his symptoms, anxious to add real-life experience to their textbook knowledge. I told Steven's story over and over, reliving the experience each time.

Grandpa Greg holding a pale, listless Steven while we waited for news.

Grandpa Greg holding a pale, listless Steven while we waited for news.

Even if the diagnosis didn't return as botulism, my boy was clearly dehydrated and malnourished, he needed an IV. His veins were microscopic and his dehydration was so severe, the first two nurses tried unsuccessfully to insert a tiny needle. He was lying on a table under a bright light, finally pissed off enough to let us know he didn't want to be poked anymore. His face turned red, his hands clenched, his feet kicked, and he let us have it.

My mom, a nurse, had arrived at some point during the day and she offered to comfort him for me. I heard her brainstorming with the nurses about how to get him the nourishment he desperately needed and realized he was in very capable hands. Although I had been determined to be by his side no matter what, his tortured cries coupled with my frustration that they couldn't help him pushed me over the edge. I started to sob and left the room. The door closed behind me and I leaned against the wall and slid to the floor. I could still hear his cries but it was an immense relief to be ever so slightly removed and to accept help after feeling so alone in my fight for his life.

Once the IV insertion was successful, we returned to his room. As the fluid dripped into his veins, I watched his eyes come back to life.

He was discharged the next day and is now the healthiest 17-year-old I know. My heart still aches for the parents I encountered during Steven's miraculous one-day stay, but it turned out I wasn't one of them. I was not the newest member of the Doernbecher Children's hospital parents' club. My son wasn't dying. He was just hungry.