How I Trusted My Instincts Raising My Child with a Rare Disease

By Julia Fisher

“You’re not going to like hearing this, but babies at 6 weeks are just fussy.”

That’s what an infectious diseases doctor told me when our baby was hospitalized for the second time. He just had a spinal tap in the Emergency Room that revealed signs of meningitis, yet there was no bacterial growth. He was scheduled for surgery to get a central line placed so that he could have access to IV antibiotics since his fragile little veins could not take any more IV pokes.

In that moment, I felt everything at once. I was stunned. I was frozen. I was scared. I was angry.

When the doctor said this to me, he was leaning in front of my face, examining my baby as I held him close to my chest. Not only was this doctor in my physical space, but he was dangerously close to my mental and emotional space. After what felt like a lifetime, I finally responded as calmly as humanly possible, “As his mother, I have to disagree with you — something is very wrong.”

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