When the Doctor Said, 'We're Very Sorry, We Believe Your Baby Has Down Syndrome'

It all began at 9:45 p.m., when I started having contractions. We arrived at the hospital at 5:00 a.m. and checked in. We were told we had to have an emergency C-section to ensure the baby’s safety. I looked at my husband, Peter, and the crying began. From there it was like the “Be Our Guest” scene in Disney’s “Beauty and the Beast” — where the servers and candles were whisking around the room flawlessly getting it ready for the big ball. Only in our case, we had doctors, midwives, nurses, all surrounding us explaining things, telling us to sign papers, taking Peter to get him changed and preparing me for a C-section.

Inside the operating room, the organized chaos continued. Our son, James Alan O’Leary, was born at 8:40 a.m. on St. Patrick’s day. When we heard his first cry, Peter and I both smiled at each other and cried happy tears. We had our little miracle.

They needed to take James to the NICU to monitor him, so Peter went to watch over our son. I laid there, alone, without my family, staring at that blue wall wondering where my son was. So many thoughts and emotions were going through my mind

Three hours after giving birth, I was wheeled in to see my son. Peter sat at his side, crying and holding his little hand. We were surrounded by doctors who had some news for us. We were told James was having heart issues and needed to be transferred to San Francisco immediately to be examined. Then the doctor said, “We are very sorry to tell you that we also believe that James has Down syndrome. We are doing a gene test to confirm, however, we are pretty sure for a few reasons. We’re very sorry.”

Again, Peter and I looked at each other and just cried. Were we all going to be able to be together for our first night as a family? What does it mean to have a child with Down syndrome (especially since the doctors seem so sad about it)? Will his heart be OK? Will he be OK? All of these questions and more swirled around as we waited for the answers.

Eventually James made it to San Francisco in his own ambulance. His transporter looked like a submarine with all the cords and stuff attached. Peter followed him, and I arrived four hours later in my own ambulance. When we got to the hospital, I begged our nurse to go down and see my son. I’d only seen him for maybe a half hour since he was born. This time, she let me hold him. When they put my boy in my arms, a sense of relief fell over me; I was in heaven. It was scary, holding this little guy with all the cords and things sticking out of him, but so worth it. I held him as long as she’d let me and then we returned to our room. The tears rolled down my face like a waterfall. It was the scariest but best day of our lives.

If I could go back to the day my son was born and we learned he had Down syndrome, I would have wiped away the tears and smiled. I would have told the doctors a mother’s love for her son doesn’t change with one extra chromosome, so don’t be sorry. I wouldn’t have worried so much about what it all means or what the future might bring and focused on the present. Every day this boy reminds me to be a better person. His smile brings joy to my heart. In his short life, he’s taught me and many others more about life than we ever knew.

 The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.