The following story was originally published in the book Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (10th Anniversary Edition) Royalties will be used to provide free copies of the book to genetic counselors and other medical professionals who convey a diagnosis of Down syndrome to new parents. The book can be purchased at Amazon here…Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (10th Anniversary Edition)
IT WAS A BEAUTIFUL SUNDAY in August at the local farmers’ market. I was checking out some heirloom tomatoes when I noticed an eccentric-looking older woman in a long skirt and a crocheted hat, standing a safe distance away. She was looking at my belly. I was six
The woman called out, “It’s a girl, isn’t it?”
“Yes, it is,” I replied politely, unimpressed by her lucky guess and hoping she’d leave me alone.
“I can tell,” she said. Then with a perplexed look and a furrowed brow she added, “I can see her.”
Now she had my attention.
“She’s…interesting,” the woman muttered to herself. “She’ll come in the morning.” Then she looked straight at me. “Will you breastfeed?”
“Yes,” I said. “Tell me more.”
She said she couldn’t because she wasn’t working that day. Then she walked away, leaving me in a panic.
What did this woman see? Did she see the Down syndrome? Was there more that she could see that ultrasounds hadn’t shown me yet? Clubbed feet? Extra or missing fingers? Was the baby ugly? I tried to shake it off, but my mind was running all over to bad places,
I had found out that my baby girl had Down syndrome at eleven weeks of pregnancy through noninvasive prenatal testing. Due to my advanced maternal age of thirty-eight, my genetic counselor had offered me the blood test. Initially I wasn’t going to take the test because my first-look ultrasound had showed no issue, but then I figured, Why not? It’s a simple blood test. I’ ll put any questions to rest, and I’ ll get to know if my third baby is a boy or a girl.
I had two amazing girls already, ages four and seven, who loved to sing and dance, play “let’s pretend,” and be creative. A week before the blood test, my husband and I had delivered the news to them that they were going to be big sisters. Given the flawless ultrasound I had had earlier in the week, and the 1 in 100 chance of having a baby with a genetic anomaly, we figured it was safe to tell the girls. They were beside themselves with excitement.
I didn’t think about the blood test again after I took it. Four days later, on a Thursday evening, I received the news that would transform my life forever.
The phone rang. I saw “Brigham and Women’s Hospital” on the caller ID. Again? I thought. That’s weird. The hospital had just called five minutes ago with a recording to remind me of my upcoming prenatal appointment. Not even at that point did the blood test cross my mind. I figured this call would be another recording, maybe a mistaken repeat of the first one. But when I answered, the genetic counselor was on the line. She asked, “Do you have a few minutes to
discuss your test results?”
“Yes,” I said, surprised and with my heart beginning to drop.
She continued, “It’s not what we were hoping for.”
I descended the stairs to the basement playroom to get some privacy. I didn’t make it all the way down; I needed to stop and sit on a step for a few seconds. It was surreal. In one ear I could hear the genetic counselor explain the test results; in the other I could hear
my family upstairs, playing and singing, blissfully unaware that their entire world had just changed.
It was a mother’s worst nightmare. I had taken a chance on another baby and was now carrying one with a disability who could drastically affect my family’s lives in a negative way.
I moved to the couch in the basement so nobody upstairs could hear me. I asked the genetic counselor about the possibility of a false positive and how definite this diagnosis was. She told me there were very few false positives with this kind of test. Then she said that I could give her a call any time during the upcoming holiday weekend. When she gave me her cell phone number, I knew it was serious.
At that point my husband came downstairs, wondering what was going on. He heard the one-sided conversation as I asked a few more questions on the phone. I made sure to say the words “Down syndrome” in my questions to give him a hint. It was hard to say
them out loud.
I asked the genetic counselor if she knew if it was a boy or a girl. I repeated her answer so that my husband could hear. “A girl,” I said, my voice relieved but shaky. “Thank God, that’s what we wanted.” But in my mind I thought, Wow, a baby girl with Down syndrome. That’s not what we expected.
As if she could hear my thoughts, the genetic counselor assured me that children with Down syndrome are very loving. Then she paused. “Do you have any more questions?” she asked.
Of course I had questions. Like, How did this happen? What will this mean for me and my family? But those weren’t questions she could answer. “Not at the moment,” I said. “I feel like I should, but I don’t.”
“That’s okay. Typically these phone calls are very quick,” she said. “Then the news sets in, and people call back with questions. Call me anytime. In the meantime I’ll get some information together and send you an e-mail.”
Shock set in but wore off by morning, and then came the waves of devastation. I spent two days almost constantly crying. When my girls asked what was wrong, I told them that the baby wouldn’t be smart and wouldn’t look like us. I also told them that she probably
wouldn’t be very healthy. I knew nothing about Down syndrome, and I assumed the worst. I had to consider termination just to allow myself to know there was a way out.
Over the next few weeks, I had many ups and downs. In addition to my own fears and sadness, it was difficult to handle the reactions of people around me. When I felt calm enough, I would tell friends about the diagnosis, but it was hard to hear so many of them
say “I’m sorry.” Our parents initially struggled with the diagnosis because they had some outdated beliefs about Down syndrome. They worried about us and our girls and our future. My obstetrician cried with me at my next three appointments.
Slowly I came to terms with the diagnosis through educating myself. In addition to researching on the Internet, I contacted a woman in town. I didn’t know her well, but I did know she was the parent of a ten-year-old with Down syndrome. She spent two hours with me answering all my questions. That helped. So did the fact that my husband and I rode the emotional roller coaster together. We were on the same page the entire time and spent many evenings on our deck discussing our feelings more than we ever had in our
I knew there was a reason for this child coming into our lives, and I tried hard to be confident that we would be okay. However, I still couldn’t shake the negative thoughts that would pop into my head. How sick would this baby be? How dependent? How would
this affect our other two children? I wanted more ultrasounds, more echocardiograms, anything to tell me if there were any heart defects developing. Were there any gastrointestinal defects? And what about her cognitive abilities? But my doctors said there was no need for additional scans, and so I would go my entire second trimester with
no extra testing. Besides, there was no way to tell what her level of cognition would be prenatally.
There were so many unknowns and so many questions that couldn’t be answered. I was desperate for any information, even if it was from a stranger at the farmers’ market.
After my encounter with the eccentric, long-haired woman, my family and I spent a little more time browsing the fresh produce and local crafts. I kept looking around, hoping to spot her crocheted hat in the crowd, but she was nowhere in sight.
Finally we decided to leave. We walked a couple of blocks to where our car was parked, and there she was, standing right next to it with her bag of goods. My heart started pounding. It made no sense for her to be standing there. It wasn’t even close to a bus stop.
“Oh, it’s you again,” she said. She looked at me intently.
I felt ridiculous, especially with my husband and kids watching, but I had to say something back. It was my big chance to get more information from this woman who, in my moment of pregnant insanity, seemed capable of answering all the questions that blood tests and ultrasounds couldn’t answer.
“I already know the baby is interesting,” I said, trying to sound casual. I didn’t want to scare the woman off with my desperate need for more insight. I was going to tell her that the baby has Down syndrome, but before I could say anything further she asked, “Do you have a name picked out? She needs a strong name. She’s going to do great things.”
I felt immediate relief. Great! I thought. This lady doesn’t know what she’s talking about. She knows nothing! This baby has Down syndrome and will unlikely do great things.
I smiled indulgently at the woman. “No, I haven’t picked out a name yet.”
I was done with this conversation, but now it was she that wanted it to continue. As if sensing my attempt to escape into my car, the woman asked, “Are you Jewish?”
“Nope, Catholic. Why?” I waited for more confirmation that this woman was just making all of this up.
“Because I see the Star of David on her. You’ll have two more children too.”
I almost laughed aloud. Keep it coming, lady—you’re wrong! She was wrong about the baby doing great things. She was wrong about the Star of David and the two additional kids. Whatever else she meant about my baby being “interesting,” she was wrong about that too.
“Thank you. Have a nice day!” I said, as my family quickly got into our car. The woman continued to mumble something that my husband and I didn’t clearly hear, but we’d had our fill of predictions.
Several times that evening I smiled and shook my head at the
crazy assumptions the woman had made, so sure that she knew the truth. It wasn’t until the next day, when I was relaying the story to a friend, that I realized what was really wrong with the whole situation: my own negative assumptions. Not about the woman, but about my own child. Whether this woman was a true psychic or just wildly eccentric, she taught me something. She taught me that I was already putting limitations on my unborn baby due to a diagnosis. Why had I taken “interesting” to mean unhealthy and flawed? Why was I so sure that this child wouldn’t do great things?
After that encounter I looked at our future with more optimism. I surrounded myself with people who had an encouraging reaction to my child’s diagnosis. I sought out inspirational stories of individuals with Down syndrome. I connected with other parents of children with Down syndrome and soon found myself part of an exclusive club of wonderful, knowledgeable parents. I researched doctors and had prenatal visits with each of the two Down syndrome clinics in our city. Ironically, none of my prenatal ultrasounds ever showed any markers for Down syndrome. (Thank you, noninvasive
prenatal testing, for the gift of knowing ahead of time.) But I was prepared, and I ended up thoroughly enjoying my pregnancy, despite knowing that our journey ahead would be one not typically traveled.
Geneva Faith Szocik was born on a chilly November day in 2014. I had an amazing natural birth and an even better postpartum experience thanks to knowing her diagnosis in advance. After all my fears about Down syndrome, her first year has been rather uneventful. Other than a small heart defect that is not affecting her, she is
healthy. Through her huge smile and beautiful eyes, she radiates a warm, magnetic love that makes you want to hug her for days. Just as the woman at the farmer’s market said, she did arrive in the morning. She is indeed interesting, in a wonderful way. And she is already doing great things.