April 10th, 2014: I texted a photo to my husband. The lower half of my smiling face was blurred out in the background; the real subject of the photo was the positive pregnancy test I was holding. We had been trying to get pregnant for almost nine months. Heartbroken and overwhelmed by the stress of the negative results each month, I had just deleted all the tracking apps on my phone and we agreed to put baby planning on hold until I finished my degree in May. And then, pregnant.
I was approaching my thirty-sixth birthday in July, and I joked about my geriatric pregnancy with my best friend. I never seriously considered that the baby could be at risk—I was healthy. I ate well, exercised regularly, and looked and felt much younger than a mid-thirty-something. My husband actually is younger than I am, so we dove into the experience, confident that youth and good old-fashioned luck were on our side. We interviewed a doctor recommended to us by friends, and clicked with him and his staff immediately. I graduated from college. Despite the sudden appearance of all day morning sickness, the pieces of our lives seemed to be falling into place nicely. At ten weeks, our doctor offered the Harmony screening test, and we consented. The test was non-invasive and risk-free to the fetus, and besides, our primary motivation was to find out the sex much earlier than we would have been able to otherwise. We had two great names that we finally settled on, and we couldn’t wait to share the news with friends and family.
The date of our doctor’s phone call is lost in the archives of my inaccurate memory, but I know that it was a Thursday, and I was sitting on our couch in the living room, between my husband and my daughter. The office had my husband’s phone number listed as mine, so he got the call. After a few beats and couple “mm hmm’s” and “okay’s”, he wordlessly handed me the phone. The doctor asked if I wanted the results of our screening test over the phone, or if we preferred to come in, and of course, I couldn’t wait. I heard a pile of disconnected words: “results…99%… Trisomy 21…options…resources…next steps…” And then: “I’m sorry, I know this probably wasn’t the result you were hoping for.” He asked if I wanted to know the gender; I choked out a “yes.” The doctor said, “It’s a boy.”
I was sobbing so hard I barely registered that the doctor had gone over everything and was attempting to wrap up the conversation as gently as he could. I thanked him for the call even though I really just wanted to smash my phone on the floor. I struggled to repeat the message for my husband, who immediately had questions I couldn’t answer. I couldn’t recall much of anything, except that we were having a boy. He had to call the doctor back to get the information he wanted. My daughter just hugged me, but she looked worried too. She is thirteen and had just been getting warmed up to the idea of having a younger sibling. I couldn’t mask the building hysteria or my outright grief. I couldn’t tell her that everything was going to be okay. I didn’t think it would be.
"How could this happen to me? To us? To my son? I felt like I had been wrapped in fury."
When I was twenty one, I got pregnant unexpectedly. I wasn’t married, I made very little money, and I lived in a closet-sized apartment in the city—hardly an ideal space to bring a baby into. I had my daughter anyway, and like most everything in my life, over time, the obstacles lessened and we carved out a lovely existence for ourselves. I thought I had done everything right this time. I met a nice man, we dated for two years, then got engaged. We married seven months later, and six months after that, I was on his company’s insurance and we were trying for a baby. Everything had unfolded on a socially-acceptable, parent-approved timeline. How could this happen to me? To us? To my son? I felt like I had been wrapped in fury. Every part of me was vibrating like a water molecule right before it hits the boiling point. I had wanted the baby so badly, but in those first days after getting the results, I could hardly stomach the thought of being pregnant. I felt invaded and I just wanted someone to get it out of me.
I had every reason to terminate: we were eleven weeks into the pregnancy, I live in a state where services are affordable and accessible, and my friends would support us if we made such a decision. Ethically, we were both pro-choice, and not religiously convicted to keep the pregnancy going at all costs. Recent statistics suggested that more than 90% of families who received a pre-natal diagnosis of Down syndrome chose to terminate and I could see why. The prospective pressures of raising a child with special needs seemed dauntingly expensive and emotionally taxing. When my daughter was a baby, I was a social worker and several of my clients had Down syndrome. Though I was familiar with the diagnosis, my son’s future didn’t strike me as particularly appealing. Could I choose to continue the pregnancy if it meant he would suffer a similar fate? I was fond of the clients I had cared for, but that wasn’t the life I envisioned for my own child. And what about my daughter? She needed a mother to help her navigate her teen years, not a stressed, drained caregiver who didn’t have any resources left for her after the baby was seen to. What was the point of embarking on a journey when it seemed unlikely that the obstacles would ever go away, or get better with time?
For three days, I only spoke to five people: my husband, my daughter, my daughter’s grandma (who I call my Arizona mom), and my two closest girlfriends. I cried, I raged, I questioned, and I researched. I found the website for the National Down Syndrome Society and learned that with 1 in 691 babies being born with Down syndrome, it is the most common genetic condition. I sorted through my fears and got the facts. The range of function is wide and impossible to determine prenatally. Many of the physical problems commonly associated with the syndrome can be managed with early intervention therapies. People with Down syndrome have life expectancies on par with their typical peers, and as adults, many of them drive, go to college, own businesses, have romantic relationships, and even have children of their own. While it is a myth that people who have Down syndrome only experience feelings of happiness, a survey study conducted at Children’s Hospital in Boston found that 99% of people who have Down syndrome report that they are happy with their lives. Only 76% of Americans reported the same overall life satisfaction on the most recent OECD Better Life Index poll.
The statistics were reassuring, but I needed to know what these experiences were like in real life. I joined several support groups on Facebook and combed through the families’ posts, hoping to find an indication that everything could be okay if your child has Down syndrome. Everything was not always okay, but I saw love and solidarity across the board. These parents worried about their children just like I had worried about my typical daughter. Sometimes the concerns looked a little different on the surface—more posts on AV canal defects, ng tubes, and hypotonia than your average parenting forum—but I was struck by how the similarities outnumbered the differences. Many of the people I met in the groups were coping with a post-birth diagnosis and now that the child was born, they had to deal with it. There was no choice but to carry on in most of their cases. We did have a choice, but I started to think that maybe we could do this. Maybe this diagnosis didn’t have to be a tragedy or lead to the end of the pregnancy. Maybe we could figure out how to negotiate this new territory as a family.
". . . 99% of people who have Down syndrome report that they are happy with their lives. Only 76% of Americans reported the same overall life satisfaction . . ."
I woke up the Sunday after we got the news and the angry buzzing sensation was gone. I felt still and peaceful. And I was completely overcome by the conviction that we could keep this baby. We knew we would still worry about him, but for us, that wasn’t a good enough reason to terminate. My husband and I traded what-ifs back and forth: if he didn’t have the extra chromosome, he could still have been diagnosed with cancer, hurt in a car accident, or develop a drug addiction. As he is, he could still grow up and change the world in his own way. Life doesn’t hand out guarantees, no matter how many chromosomes you are born with.
We decided to get the CVS test for a conclusive diagnosis, and once the results came back positive for Standard Trisomy 21 (the kind of Down syndrome he has), we started calling our families and friends. On June 11th, I posted a general message on Facebook, announcing that we were having a son, and that he was diagnosed with Down syndrome. We asked people to refrain from pity and reminded everyone that we were having a baby, not a problem. The response was 100% positive and we have been overwhelmed (in the best way) by the amount of goodwill, support, and love we have received from everyone in our community. My daughter even offered to keep his crib in her room for a night if we get overly tired and need a break.
I’m a little more than seven months along now. Our son’s heart appears to be whole and healthy, and at least according to the ultrasounds, no additional physical defects are present. He’s growing on schedule and is very active. He has his daddy’s nose and my bottom lip. I worry about the cats jumping into his crib, and my water breaking at work. Even though the future still seems a little scary, I look forward to the day I get to tell him about how his daddy and I loved him so much, we chose to bring him into this world and share a life with him. His name is Rex. I can’t wait to meet him.
Rex was born on November 28, 2014. He is happy, healthy, and beautiful. If you would like to donate to charities that support Rex and other great kids like him, try Down Syndrome Diagnosis Network or GiGi’s Playhouse.