When My Daughter Received A Life-Altering Diagnosis, I Heard This 1 Phrase. I’ll Never Repeat It.

I had just stepped out of the shower when my husband, Scott, called from the hospital, where our 9-year-old daughter had been a patient in the pediatric ICU for four weeks. He had relieved me that morning so I could go home, shower and return for a meeting with the doctors about our daughter’s condition. 

When he told me our daughter’s diagnosis was “neuromyelitis optica,” a rare autoimmune disease that attacks the central nervous system, my heart didn’t just sink. It stopped. A silent, internal arrest. In a single moment, my physician’s mind ran through the prognosis. Rare, incurable, potentially fatal. My heart broke under the weight of my devastation. 

Steam still hung in the air, my wet hair dripped as I clutched the towel around me, my skin still damp. When the words came through the phone, my legs gave way.  I slid down the wall until I was sitting on the cold bathroom tile, the phone pressed to my ear, my breath caught in my chest.

Scott asked if I was still on the phone. “It’s good we finally have a diagnosis,” he said, searching for a foothold of hope.

After a long silence, I whispered: “That’s not a good diagnosis.”

As a physician, I knew exactly what this diagnosis meant: Not only was it incurable; it often led to blindness, paralysis and ongoing hospitalizations.  

About a month ago, our daughter Nell had woken up one morning with nausea, dizziness and overwhelming fatigue. When I took her to the emergency room, her symptoms escalated rapidly. She became unresponsive, and a brain MRI revealed multiple large areas of inflammation. 

As her neurological status declined, her tongue and the other muscles involved in swallowing became paralyzed. Because she couldn’t clear her oral secretions, she developed aspiration pneumonia and was admitted to the ICU, where she developed right upper extremity paralysis and lower extremity weakness. 

She remained in the ICU for five weeks, hooked up to beeping monitors and struggling to recover from what appeared to be a pediatric stroke. The diagnosis was made a few weeks later.

The contrast between the recent memories of my daughter powering down the lacrosse field, her face lit up with joy after scoring a goal, and now seeing her lying in the ICU was stark. She was unresponsive, her face pale, her little body wired with tubes and monitors. The sound of machines beeping echoed where there once had been giggles.