Hindsight illuminates the early signs that my daughter had Rett syndrome

In 2009, my husband and I were living in a third-floor condo in Chicago. My brother and his wife lived just 2 miles away. Within eight days of each other, we both welcomed beautiful baby girls into the world. It felt like a dream come true. Our daughters would grow up together, reaching milestones side by side.

When the girls were about 2 months old, my sister-in-law was babysitting our late daughter, Cammy. When I arrived to pick Cammy up, my sister-in-law casually asked, “Does Cammy always make that clicking sound when she eats?”

Without hesitation, I answered yes. At the time, I didn’t think anything of it because I had no reason to. Cammy was my first child, and that sound was simply part of who she was. I asked if she thought it was concerning. She said no, but mentioned that she’d never heard another baby make that noise while eating.

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The conversation quickly faded from my mind. It wasn’t until Cammy was 20 months old and undergoing a swallow study that I remembered it. By then, doctors had already identified several red flags that ultimately led to her diagnosis of Rett syndrome.

A few months after the exchange with my sister-in-law, when Cammy and my niece were 4 months old, our families were spending time together. My brother held his daughter upright so she could bear weight on her legs. Wanting a similar photo, I tried to position Cammy next to her cousin. Instead of supporting herself, Cammy’s legs immediately sprang upward into a frog-like position. I tried again and again, confused by what I was seeing.

Was my niece unusually strong? Was Cammy simply not interested? Or was something else going on?

At the time, I didn’t have answers. Looking back, that was the first moment I wondered if Cammy might be developmentally delayed.

Early signs can be hard to spot for a first-time parent

Like so many memories from those early years, that moment remained tucked away until after her diagnosis just before her second birthday. As I learned more about Rett syndrome, I discovered that low muscle tone and absent protective reflexes were characteristics. Suddenly, that confusing afternoon made much more sense.

The realization became impossible to ignore when the girls were approaching their first birthdays. My sister-in-law and I enrolled them in a music class at Chicago’s Old Town School of Folk Music. The first week was wonderful. After that, it became increasingly difficult for me to attend.

Week after week, I watched classmates reach milestones that seemed impossibly far away for Cammy. One by one, babies began walking, including my niece. Each new walker felt like a punch to the stomach.

Cammy was nowhere near walking. In fact, she wasn’t even crawling. She could sit independently for only a minute or two before toppling over. She had incredibly low muscle tone. For the first time, I couldn’t convince myself that she would catch up.

Something was wrong.

Looking back now, I can identify many other red flags scattered throughout Cammy’s infancy. But as a first-time mother, I didn’t recognize them for what they were. I wasn’t ignoring warning signs; I simply didn’t know they were warnings.

Sometimes hindsight doesn’t just provide clarity — it rewrites entire chapters of our memories. Moments that once seemed ordinary become significant. Questions that felt fleeting become pivotal.

Only years later did I realize that Rett syndrome had been leaving clues from the very beginning.

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.