It took 9 months for my baby to be diagnosed with a congenital heart defect. I regret not asking her doctors more questions.
When my daughter was a baby, I had to rush her to the ER several times for breathing issues.
It turned out she has a serious congenital heart defect and needed surgery.
I wish I had asked more questions the first time we went to the ER.
I was holding my 4-month-old daughter tightly in my local hospital's emergency-triage room when a nurse posed a question I'd never forget.
"Has she been scoped, Mom?" she asked, peering over her shoulder as she paused in the doorway.
I thought back to the procedure she'd had in the ear, nose, and throat specialist's office 10 weeks prior. As gently as possible, he'd strapped my 6-week-old baby into a chair and threaded a camera down her nose and into her throat. Within minutes he'd diagnosed her with laryngomalacia, an excess of floppy tissue in her larynx that he said would cause complications with respiratory infections. The diagnostic procedure, called a laryngoscopy, had only taken a few minutes.
"Yes," I answered the nurse in triage. "Yes, she was scoped at 6 weeks. She has laryngomalacia."
My answer would haunt me for years and years. Over the next nine months, I'd find myself rushing to the emergency room with my daughter twice more, her breathing so labored that her chest caved in with every breath. In between ER visits, she suffered from infection after infection. I had to quit my job to stay home with her and tried to keep her away from germs. When we returned to the ear, nose, and throat doctor's office after her third hospitalization for respiratory issues, he told me it was time for her to be scoped.
"OK," I said. "She'll scream her head off, but I guess it has to be done."
He stopped me then to explain that he didn't mean an in-office laryngoscopy, like last time. He meant he wanted her to have a bronchoscopy, a more involved procedure that needed to be done under general anesthesia. "That's what I mean by 'scoped,'" he added.
She had a heart defect that caused all the issues
A few weeks later, the bronchoscopy revealed that my daughter had a serious congenital heart defect: a ring of artery wrapped around her esophagus and trachea, compressing both of them. Her severe responses to colds and her lack of interest in solid foods were caused by this compression, and she was quickly scheduled for cardiac surgery to repair the issue and relieve the compression. Though she technically did have laryngomalacia, it wasn't the main issue after all.
My stomach dropped when I realized what the nurse — and those we saw in other emergency visits — had meant by "has she been scoped." They had been referring to the more invasive and deeper "scope" done under general anesthesia. They'd been looking for anything to explain her illness and, when I'd assured them the only diagnosis she had was laryngomalacia, they'd moved on.
For nine months, we missed the more serious issue causing my baby's respiratory distress. It was devastating.
I wish I had asked more questions the first time we went to the ER
Looking back, I wish I'd asked more follow-up questions. When the nurse asked me about her "scope," I could have answered in any of the following ways:
"She had a scope down her nose into her throat. Is that what you mean?"
"I think so — can you tell me what you mean by 'scope?'"
"I'm not actually sure — can you check her electronic hospital records at the children's hospital?"
It can be very hard to keep track of your child's medical history, especially if it's complicated — and it's even harder when you're in an extra-stressful situation like an emergency room. Unfortunately, that makes it even more important that you keep your antennae raised and ask for clarifications from hospital staff when you're not sure. My daughter's cardiac surgery was a success, but it could have been done sooner. I wish I'd known what to ask.
Debi Lewis’ memoir "Kitchen Medicine: How I Fed My Daughter out of Failure to Thrive,” is available now.
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