The doctor said, “Sputtered.” For weeks, I devoured the word searching to understand it, to see if it held answers to what was happening to my infant son. On dictionary.com, there are several meanings, but in general it meant to strongly emit or eject anything such as food or saliva. To me it sounded banal and routine as if it were merely a scraped knee, a fallen ankle, or the way the pediatrician described it as a pause in an otherwise perfectly healthy engine.
When you are a new parent recovering from childbirth, in the throes of hormones and sleep deprivation, things can get blurry. The image of that day, however, is sharp.
My husband held our four-pound one-week-old newborn on the white couch. The sun sliced through our window, shining on him like a spotlight.
“Do we still have the parent handbook?” he asked.
I passed my son to my husband after a failed attempt at nursing and was in a stupor searching for something—probably a drink of water, possibly a moment to rest.
“What? What are you talking about?” I asked.
“He’s turning purple,” my husband called out, drawing out the words. “Can you find out what we’re supposed to do about it?”
Some rise to the occasion, getting assertive in times like these. Not me. When I was learning how to drive and my instructor called my name out in that same forced tone, “Brandi. Brandi! Stop the car,” I felt the urgency, but couldn’t will my foot to press the pedal. I was paralyzed with fear. If it weren’t for him pulling the hand brake, we’d slam into the oncoming car.
I wished someone could pull the hand brake as our son’s breathing shortened. But there were just two of us, freshmen in the parenting world. This moment forcing us into a sieve. Each second disappeared into another. His face was only getting darker.
I threw out handouts. Thrashed through pamphlets. Was there even such a thing as a parent handbook?
“He’s breathing again!” my husband said.
Relief flooded me like the blush on my newborn’s face. It was over for now. I could breathe because he was breathing. I wanted so desperately to return to the naïve me from just a week before when I was still pregnant—when the fantasy of a perfect baby was still viable.
We phoned the pediatrician, the one that would call it sputtering weeks later. He was out of town. The only one who could help was his colleague, the guy he described in our initial interview as someone he wouldn’t trust with his own kids.
There wasn’t time to reflect or sob or search for an alternative. This doctor insisted we go to the ER immediately.
We waited in the cold chairs while our doll-sized son lay hooked to monitors. After hours of waiting, the attending physician recommended antibiotics and an X-ray to rule out pneumonia. It didn’t seem right. I argued with the doctor. I didn’t see the necessity of it. He wasn’t ill. He just had a bout of breathlessness. His reaction?
“Do you have anything better to do at two in the morning?”
I swallowed that voice I would later recognize as mother’s intuition and allowed the medical team to strap my baby upright like a rotisserie chicken. The technician assured me he wouldn’t remember it, and that it wasn’t going to harm him. I had to plug my ears to muffle his screams. The image still haunts me.
If that was an isolated event, maybe I could tuck the memory away with his newborn onesies. Instead, for seven months, it reoccurred. Those were the longest seven months of my life.
We were in and out of offices and hospitals. Not only did my son spontaneously turn purple, he also didn’t gain weight. My own stress and chronic health issues compiled with his tongue-tie led to him not getting enough milk, and landed him in the hospital overnight for severe jaundice. I saw lactation consultants who advised me to have his tongue-tie snipped. “It won’t hurt him,” they said. “He’ll be able to nurse,” they said. All I heard was more screaming.
The worst of this entire ordeal was how alone I felt. As a new mother, I already held the baggage of vulnerability that comes when you have no idea of what you’re doing. You’re sleep deprived. You feel inadequate to handle the sleepless nights and the unending crying. I was an only child who never babysat once in my life. Having the doctor not believe me and deem me anxious was an easy out, a way to dismiss myself as a mother. It didn’t help that I was sleep deprived or that he said my son suffered a single episode, everything after that was normal “sputtering” while feeding. In fact, no one, not the lactation consultants or my relatives, had seen him turn purple. My husband only saw it happen the first time.
During my lowest points, I was so afraid he’d suffocate while asleep that I told my husband I would stay up all night to watch him. I dreaded feeding time. I bought different nursing pillows and researched positions to hold him. Every time he turned purple, I felt I couldn’t breathe either. While this was supposed to be a happy experience with my newborn baby, everything dimmed in the light of his survival. I was laser focused on the sounds he made while drinking and the color of his face.
The stress and lack of sleep took their toll. The pediatrician referred me to a health psychologist whose job, I assumed, was to validate and support me. Instead he told me I had “enough anxiety for all the mothers in the NICU.”
Then several weeks later after I nursed my son and handed him off to my husband, he yelled, “It happened again!”I had to hit his back to get him to breathe.”
The pediatrician initially thought it was a feeding position issue or I was making too much milk. I tried everything. I even created a spreadsheet entitled, “Figuring Out Payton,” with various nursing positions and its resulting outcome. In the end, he was finally diagnosed with severe infant reflux. Even though I hated the idea of giving him medication, I was elated that there was something I could do to stop it.
Through all this, our pediatrician stared at me with disgust. “You’re wasting the best time of your life,” he said.
I was ashamed but a part of me was growing stronger inside, a side that knew what he was saying had nothing to do with me. It’s been seven years since then, and never have I regretted feeling how I did. How could I possibly enjoy that time? The best moments did happen when he was seven months old and stopped having an episode. That experience was life changing.
I read a similar story of another mother once. She was also given the label of anxious and ended up taking medication for it. I know this is the right thing to do when you’re falling into a hole and you need support. When no one is listening to you, and you’re a new mom with not a lot of sleep, and you feel like your life depends on this tiny creature’s life, you can easily be rendered as crazy or anxious. And you can write your own self off that way. But maternal anxiety isn’t remotely always the correct diagnosis. Maternal anxiety did not induce my need to help my child. Natural instinct and observation, rather than anxiety, were to blame.
To get through every single time my two kids get sick and the times when I don’t agree with our current pediatrician (we fired the last one), I remember that, yes, doctors have degrees and expertise. But I am their mother. They were inside my body. They are a part of me.
It’s a painful lesson to learn. One that I wish all physicians understood. Education and research shouldn’t overrule a mother’s intuition. Every person reacts to a difficult situation differently. Some have had traumatic childhoods. Some are highly sensitive. Some have a history of bad doctors who didn’t listen. These very individual circumstances show that not everyone will respond to the same situation in the same way. That doesn’t mean what they’re saying isn’t true, have validity or warrant being heard. Anxiety is an easy label that makes doctors turn an ear, which is the dangerous part of all this.
If I listened to myself, I wouldn’t have had that ER physician send him to get an X-ray and a steady stream of antibiotics. And I would have been right. When our pediatrician returned he berated me, “Why did you do that? He’s so tiny the x-rays wouldn’t have shown anything anyway. He didn’t have a virus so the antibiotics was for nothing.”
That’s something I’ve had to live with and learned to forgive myself for. It’s the impetus that reminds me my job isn’t to be the perfect patient or win over the doctor.
I’ve also grown compassion for myself and other mothers who feel vulnerable to authority figures and people in high positions of privilege. As a Japanese American woman whose pediatrician was Caucasian, I can’t help but wonder how much of our conflict was due to cultural differences. A lack of empathy and cultural understanding as well as being dismissed could have been the result of a burnt out doctor. But it could also have been a dangerous denial of a mother’s instinct. While the image still haunts me, the experience has pushed me to grow as a mother whose voice continues to speak up for her children, who has fired two pediatricians since then, confronted school authority figures and will never again quiet my own inner voice when it comes to my children.
Brandi-Ann Uyemura is a sixth-generation Japanese American writer who has worked as an associate editor for Psych Central and a columnist for The Writer with her ghostwritten pieces in MindBodyGreen, Yoga Journal, and US News Money. Her essays have appeared in Spirituality & Health, Whole Life Times, A Fine Parent, ParentMap, Thrive Global, Mother.ly, and soon to be published in Literary Mama. She’s also a 2020 PBChat mentee and currently undertaking children’s fiction while homeschooling her two sons in her hometown of Oahu.