It’s Hard Until It’s Harder

When I had my first daughter, Ronni, everything was new and surprising, just as it is with any brand new parent. We took her to the pediatrician at 10 weeks old because she was pulling on her ears, which we thought meant she had an ear infection. He was avuncular and had seen it all. He humored us by looking at our round-cheeked, dimpled baby girl, peering into her ears, and then telling us casually that she was pulling on her ears because she had discovered that she had ears.

Humbled, and fighting my own demons that told me everyone knew better than I did, I took her home and treated her like a healthy, normal baby. Luckily, she was.

Three years later, Sammi’s birth was a shocking, week-late affair involving big terms like “intrauterine growth retardation” and an unplanned caesarean section. She came home, all four pounds and eleven ounces of her, and we expected her to be little but healthy. No one had seen anything wrong with her once her blood sugar stabilized. Because her sister had yet to experience any ailments beyond pink-eye, we had no sense of what a normal respiratory infection in a baby should sound like.

Even so, something continued to haunt me about her. She was a relatively easy newborn, but there were things that seemed off. I was exhausted, but that hadn’t stopped me after Ronni’s birth from falling instantly and deeply in love with her. Sammi seemed…off. Not right. I couldn’t put my finger on it. I loved her, but it felt instinctual rather than emotional. I was incredibly ashamed, and tried not to think about it.

One day I took her to the pediatrician because she was breathing very quickly. I’d consulted our dusty copy of Dr. Spock, and she was breathing about a third more quickly than she was supposed to. And she was asleep. The doctor declared it “rapid breathing of the newborn” and sent me home.

Ronni, age 3, started calling Sammi “baby snort-squiggle,” because she squirmed and spluttered and breathed like someone with a constant cold. At Sammi’s one-month checkup, her pediatrician offhandedly mentioned “tracheomalacia.” I made him write it down.

“Oh, you’re going to go home and look it up on the internet?,” he said to me with a wink. “Sure. Go ahead. It’s nothing. She’ll grow out of it.”

I looked it up. It worried me.

Against the advice of our pediatrician, we took Sammi to see a pediatric otolaryngologist (also known as an ear, nose, and throat doctor) at the local children’s hospital. I’d been following the journey of a parent on the Mothering.com forum, a woman whose daughter wasn’t diagnosed with severe reflux until the mother took the drastic step of videotaping her baby nursing. The video showed clearly that the baby would arch her back wildly by the end of a feeding, a known symptom of this type of reflux. That video moved that baby’s diagnosis forward far more than any pleas from her mother.

Taking a cue from that experience, David and I recorded the sound of Sammi’s breathing before, during, and after a feeding. After any feeding, she sounded like Darth Vader. We played it for the otolaryngologist, who thanked us and insisted on a laryngoscopy. At the time, I thought watching my six week old baby have a laryngoscopy was the worst thing I’d ever see. In the years that followed, I would find that I was wrong.

The otolaryngologist diagnosed Sammi with GERD (reflux), and also not tracheomalacia but laryngomalacia.

“She’ll outgrow it,” he said, “but she’ll have a much harder time with colds until she does.”

Those words, and that diagnosis, were as prophetic as they were incomplete. There was much more to come, but it was my first tiny moment of validation. I had never needed to guard Ronni fiercely from dismissal by a doctor — she was four before she even had her first dose of antibiotics — but I knew, in my prehistoric mother brain, that our winking pediatrician was not taking me seriously.

Instinct is powerful. I learned to respect it, one doctor at a time.

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7 thoughts on “It’s Hard Until It’s Harder

  1. Thank you for writing this, thank you for your courage and heart in writing this!

  2. […] this baby-reflux interferes with sleep and comfort and so the baby is given reflux medication. This was what happened to Sammi at six weeks old; her reflux was silent and, oddly, never resulted in spitting up. She constantly smelled like sour […]

  3. […] she was just six weeks old, we pushed to have her raspy, gurgling breathing evaluated by an otolaryngologist even though her pediatrician said it was nothing. It wasn’t […]

  4. […] imagine was that if just one parent had said to me, in Sammi’s infancy, that they had been frightened by their baby’s fragility, laid awake listening to the sounds of their sick newborn, or had to fight for health care from a […]

  5. […] doctors told us that we had postpartum depression or were “nervous moms.” One doctor winked at me when I wrote down the name of his diagnosis to look up later, a diagnosis which sounded simplistic […]

  6. […] I play the recording for the specialist, his eyes widen. He rewinds, listens again. Then he gives her a diagnosis. As I leave, he thanks me for making the […]

  7. […] was six weeks old when she had her first bronchoscopy, 13 months old when she went under general anesthesia for the first time, and fourteen months old […]

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