Andy described Ellie’s birth as running a marathon with no training. Nichole’s birth, however, was fast and perfect. I understood his sentiment when he whispered those words, “I have been surprised by joy.” His words – like a vapor – a mist that covered the crowded hospital room. If I could breath them in maybe they would fill my lungs, my mind, my thoughts. I needed those words to be my own. My baby’s naked backside faced me, taunting me, challenging Andy’s statement. Her thick neck and a floppy body making its way into my arms. Down syndrome about to be handed to me.

One of the nurses laid my baby on my chest. I stared at a small face with closed eyes.

“Hello Nichole.” I whispered

I held her small hand, aware of her short fingers and broad palm. Her feet, pudgy and with a noticeable gap between her big toe and the rest of them. Her face with a button nose. Ears small and bent at the top.

Open your eyes, please.

“I will take her now.” A nurse reached to take Nichole.

“Stay with her,” I said to Andy, “And take some pictures.”

I watched as Andy crossed the room with the camera in his hands. Excitement in his step in celebration of the birth of his second daughter.

The Apgar scores were good, nothing unusual, and nothing memorable. She weighed 7 pounds and 9 ounces. Maybe she doesn’t have Down syndrome. Babies with Down’s are very small, and Nichole is bigger than Ellie was at birth. Her weight, somehow, gave me hope.

Meanwhile, I had to deliver the placenta and get stitched. During this process, nurses also “kneaded” my stomach, working my uterus back to its small, original size. A painful experience that I welcomed, as it took my thoughts away from my fears.

Andy came back to my side once I was ready. He leaned close to me, his eyes still full of joy.

“She is so beautiful!” He said.

She is so beautiful? Could a baby with Down syndrome be beautiful?

“Do you think she has Down syndrome?” I asked in a quiet voice. I did not want anyone to hear me.

My husband looked at me, puzzled only for a second.

“Let me go check.” He turned around, back to Nichole’s side. I wondered how he could take that question so lightly, much like I had asked if Nichole’s eyes were green, or if she had curly hair.

He came back, leaned close to me again. “I don’t think so.”

“How do you know?”

“I checked her hand. She does not have the one line that people with Down syndrome have, her lines are normal.”

Maybe she doesn’t have Down syndrome. Babies with Down’s only have one line across their palms.

“I do think she has a heart issue though” Andy continued, “The pediatrician has been listening to her heart for quite some time.”

We looked at each other for a while, and then my husband broke the silence with a big smile.

“Can you believe she is already here? This is incredible!”

“Yeah, I know! It was so easy; I could do this 10 times!” I bragged, returning the smile.

“I don’t think so.”

We heard the pediatrician in the background, asking the nurses to leave the room. His remark made Andy and I stop our conversation and turn to him. The doctor made his way towards the bed.

“Why don’t you grab a chair on the other side of the bed,” he said to my husband.

Andy and I looked at each other as he slowly made his way around the bed.

The doctor grabbed another chair and pulled it close to us. He sat down and was silent for a moment. My heart pounded so loudly I was afraid I would be unable to hear what the doctor had to say. Yet, I wasn’t sure I wanted to hear what he had to say.

Breathe Ellen, breathe.

“There are a couple of things that concern me about your baby,” he finally said. “She has a heart murmur, and we will need to check into that with an echo, which is an ultrasound of the heart. She also seems to have low mus…”

“Do you think she has Down syndrome?” I interrupted him.

He looked at me in surprise.

“We knew it was a strong possibility,” I continued. “And I think she has Down syndrome.”

He hung his shoulders and looked down at the floor. He slowly began to shake his head. He lifted his head and looked intently from Andy to me.

“Yes” he responded. “Your baby has Down syndrome. I am so sorry.”


It is Down syndrome awareness month, so I am sharing our story of finding out our daughter had Down syndrome and the first few weeks of her life. If you missed my last post, make sure you read: Surprised by joy.

Next post: We belong together.

If you just joined in, make sure to read the first post introducing you to this journey: The road less traveled.

Get the Special Needs Parent Survival Guide

Cover Special Needs Parent Survival Guide

Special Needs Parents, Are You Surviving?

I created a guide with 13 practical ways to help you find peace in the midst of chaos, opt in to make sure you get a copy of this freebie!