Forever Changed

The appointment that changed our lives forever.

We expected a typical well baby visit that day.

We brought our newborn daughter in for her first well baby check-up with only minor concerns with her difficulty nursing. We had no idea that this appointment would change our lives forever.

After several minutes of looking over our seemingly healthy baby, asking many questions about her feeding difficulties and mild pregnancy complications, our pediatrician paused with a concerned crease in her brows. Her next words tore open my heart, as we struggled to process what she was saying. “This doesn’t look like Down Syndrome, but I’m not sure what it is.”

We fully trusted Dr. Collins, a down to earth petite blond, who came highly referred to us two years prior, when we searched for a pediatrician for our first and “typical” son. But now, as this highly astute, deeply caring doctor spoke, confusion and panic flooded my mind. What was she saying? What did that mean?

“Let me point some things out to you.” she explained cautiously, now gesturing to the tiny face on our quietly sleeping three day old. “Her eye lids don’t have deep creases in them, see?” I didn’t. “Her chin is a bit recessed.” Recessed? What does that mean? I thought to myself, as my throat seemed to close up.

“Her labia are underdeveloped, like a preemie, but she’s not.” I had no idea what a newborn girl’s labia looked like, having had a son as my firstborn. “She also has a very high-pitched cry.” She continued, as she jotted down notes in her chart. Does she? I wondered to myself. Dr. Collins had only heard her cry for a moment when we first unwrapped her for the check-up. Maybe if she just heard her normal cry, I reasoned to myself, everything would be fine. But no words came to my mouth.

“Those things along with her difficulty feeding lead me to believe there’s something else going on here.” Lots of babies have trouble latching on, right? I don’t understand. My heart was pounding as my mind raced for answers.

She explained that we would need to get some blood work done to try to figure things out. When she ducked out to get us the order, my husband put his hand on my shoulder, naively asking “What was that?” With my disbelieving eyes fixed on Elise, I slowly shook my head. My mind was simultaneously swirling and blank, just trying to make sense of what was happening.

A baby’s cry from the next room quickly snapped me back to mother mode. My cold clammy hands fumbled with the buckles on the infant seat.

Just as I seemed to gain composure, reassuring myself that this doctor was just being overly cautious, she reemerged in the door way. Her pale face and red, hesitant eyes looked like she had just seen a ghost. Had she been crying? “I’m sooo sorry.” she said, as she sympathetically handed me the paperwork.

With out any bloodwork or proof, her look and those words had said it all. Buckle up, this is serious. Our lives had forever changed.