The Blog by Andrea
What I Wish the Genetic Counselor Had Told Us About Down Syndrome
It was 8:30 am 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 twenty-one,” he said. He was talking about the baby I was carrying as a surrogate.
“Positive for Down syndrome?” I asked.
He was blunt: “Yes.”
It was out now, but I wasn’t surprised. Just days earlier the doctor had told us he suspected “there is something wrong with the baby.” And we had opted for genetic testing.
Then the doctor added in a very detached tone, “And it’s a girl,” and shortly thereafter hung up.
I took this especially hard because not only had we gone through so much to make this baby, but she was also my biological child. I felt guilty and responsible, even though logically I recognized I had had no control. I gave a heartbroken bursting sob, but knew I did not have time to grieve. I knew the intended parents were waiting, just as we had been a few minutes earlier. I picked up the phone to call them.
This was devastating news, but 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 scheduled a meeting for all of us with the genetic counselor 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. Given this doom and gloom, we all mourned the “perfect” baby in our minds and wept at the injustice of being dealt such an unfair hand. The intended parents felt hopeless.
Keston and I understood, but we felt that 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.
It didn’t seem 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 as well, but they had no desire. At the earnest recommendations from the doctor and the genetic counselor the intended parents chose to terminate like the other estimated 9 out of 10 parents do who are in their shoes.
But luckily, Keston and I believed in the baby girl who had already beaten some incredible odds and was now fighting for her life, from deadly discrimination. 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. Through our research we discovered a brain supplement called, “Choline” which had been shown to reduce the effects of the extra 21st chromosome in mice, which I began taking while pregnant. We researched and enrolled our new daughter in early intervention therapies which started at 2 months of age. And now 3 years later, against doctor expectations, we have an adorable and feisty toddler named, Delaney Skye, who is ahead of or on target with “typical” kids!
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. Parenting a child with a disability isn’t really all that different from a “typical” child. Sure, there are moments when life is consumed with doctor and therapy appointments, and yes, the struggle is real when your child is working so hard to accomplish something that is so easy for others.
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 ever imagined. Your life and those around you are going to be so much richer and you now belong to a special club, a club that knows how amazing life is when you have someone in your life like Delaney.
Because if I knew all the things that I know now, I would have never shed a single tear and I would have never mourned the child we thought she would be, because despite having Down syndrome, Delaney IS perfect!
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This is Marti, Delaney's physical therapist and advocate for Down syndrome
She is part of the village that raises Delaney. Marti works with children with disabilities and plays an integral role making Delaney able to accomplish developmental milestones on target with typical babies.
A big thank you to Marti for making Delaney work hard even though she might not want to, plowing through the tears and yes, tantrums and helping Delaney crawl and now walk!
Remember to thank your therapists, because they are part of the big picture!