What I Wish the Genetic Counselor Had Told Us About Down Syndrome

It was 8:30 on a Monday morning when my partner Keston and I got a call that would forever change our lives. The doctor got straight to the point. “The baby has Trisomy 21,” he said. He was talking about the baby I was carrying as a surrogate.

“Positive for Down syndrome?” I asked.

“Yes.”

It was out now, but I wasn’t surprised. Just days earlier the doctor had told us he suspected something. And we had opted for genetic testing.

Then the doctor added, “And it’s a girl,” and shortly thereafter hung up.

I took this especially hard because we had gone through so much to make this baby, and she was my biological child. I felt guilty and responsible, even though logically I recognized I had, had no control. I gave a heartbroken sob, but I knew I didn’t have time. The intended parents were waiting, just as we had been a few minutes earlier. I picked up the phone to call them.

The four of us wondered what would this mean? We agreed that a meeting with the genetic counselor surely would be able to answer that question. So I quickly scheduled a meeting for the next day.

Anxious for answers, we intently listened to the genetic counselor. She began with explanations on chromosomes and followed up with a slew of medical complications the baby “would likely suffer from if she didn’t pass away on her own.” She had no answers about medical advancements, no real-life scenarios, no support networks or resources for us. The intended parents felt hopeless.

Keston and I understood, but we felt there were still too many questions that went unanswered. If we could not get the answers to our questions from the genetic counselor, we would branch out on our own and find some. We spent hours online researching. We contacted and visited our local Down syndrome organization.

Things weren’t as bad as we had been led to believe. We saw hope!

As we found the answers we needed, we urged the intended parents to search as well, but they chose to walk away.

But Keston and I believed in the baby girl who had already beaten some incredible odds. We decided if she was meant to pass away as the doctors predicted, she would on her own, but we wouldn’t take her chance at life away. Instead, we would become her protectors and advocates. We would be her Moms.

And she not only survived, but thrived!

We chose to be proactive. We researched and enrolled our daughter in early intervention therapies, which started at 2 months of age. And now three years later, against doctor expectations, we have an adorable and feisty toddler named Delaney Skye, who is developmentally ahead or on target.

When I look back on our meeting with the genetic counselor, I wish she would have told us what I am about to tell you:

It’s going to be OK. There are things you can do to help your child thrive. You can do this. Sure, there will be moments when life is consumed with doctor and therapy appointments, and yes, your child may need to work hard for everyday tasks.

But with your commitment, your child will also grow and flourish and defy expectations. Your child will fill you with more pride and love than you ever imagined. Your life and the lives of those around you will be so much richer with a child like Delaney.

Because if I knew all the things that I know now, I would have never shed a single tear because Delaney is perfect just as she is!

Andrea Ott-Dahl is the co-author of the memoir, “Saving Delaney.” She and her partner, Keston Ott-Dahl live in the San Francisco area with their 3 kids and are well known activists and bloggers in the Down syndrome community.

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