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Diagnosed with Down Syndrome: The Choice We Made

The Chaos Of Stars quote I'd Choose You

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.

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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.

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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.

Baby Rex

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.

UPDATE:

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.

Elly and Rex

Elly and newborn Rex

Rex smiles

Rex at 10 months

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19 Comments on Diagnosed with Down Syndrome: The Choice We Made

  1. Just beautiful!

  2. What a wonderfully heart warming story. I also am the Mom of a son with a disability (now 42 yrs old), who is the love of my life in so many ways. I’m glad you chose life!

  3. We went through a period of not knowing after tests showed a very high risk of DS. We ultimately did not face that particular challenge but I know how hard those first few days can be and applaud your choice to write about your experience.

  4. Hello,

    This is a beautiful story! We’d love to repost this blog on our website, TheMighty.com. Please contact me at Melissa@TheMighty.com if this interests you! Thanks.

    Melissa McGlensey
    Associate Editor At The Mighty

  5. I have a disorder called Asperger Syndrome and I wouldn’t trade it for the world. I love kids with Downs.

  6. Your story is so close to mine. My son is 14, and my daughter Paisleigh will be born in February with Down Syndrome. I was a single mom for 11 years, and never thought for a second about having another. I met my husband and we married and he doesn’t have any children. We got the phone call on a Thursday as well and had the amnio to confirm. I’m scared about the future, but know that no matter what she will be everything I dreamed of before I got that call on Thursday. Good luck and I would love to exchange emails and talk if you are up for it!

  7. Congratulations to you and your family. I can only imagine the joy and love you’re going to experience through this little boy. I believe even those certain to suffer some level of disability would eagerly tell you that they would rather be alive then not. Bless you for your choice. I’m certain you will never regret it.

  8. I just saw Kim Rhodes talk about how her daughter might be on the Autism spectrum. She said that she had to stop thinking she might be autistic ’cause she started wondering if certain things her daughter was doing were autistic or just part of her character. I’m pretty sure a couple of my friends have Aspergers as well…they’re brilliant but incredibly awkward around people/large crowds. I made the decision way back that it’d cause me too much pain to physically have a kid; I have chronic pain and having a kid can cause a flare plus I’ll probably have to have a full on hysterectomy at 35 or 40 like Mom.

  9. What a beautiful, thoughtful essay! It embodies the process I wish for most women receiving an prenatal diagnosis: unbiased, accurate information. Our daughter, Lyra, was diagnosed with Down syndrome in the days after her birth, even though I had undergone all prenatal testing available except CV and amniocentesis (the NIPS came on the market around the time our two-year-old daughter was born).

    Like you, I am a writer and our family is also pro-choice. But I am deeply disturbed by selective elimination of the DS population in many western countries. I have written several essays on this subject on my blog, Whoopsie Piggle.

    Finally, I cannot tell from your post (sent to me by another poet-friend), when you posted this, so I am unsure if you are still pregnant or holding your baby in your arms now. Best wishes and congratulations, either way! If you haven’t already, you may want to contact Down Syndrome Diagnosis Network (http://www.dsdiagnosisnetwork.org). They administrate several Facebook groups organized by the age of the children with DS, basically a lifetime group of mamas with babies who have DS who are the same age as your baby. I have come to find it an invaluable community as we sometimes share our fears, regularly share information and, most often, cheer the milestone achievements of our children.

    All my best-
    Holly

  10. I am the guardian of a man with Down Syndrome. He is 63 years old, no health problems, and he just came from a neurologist appointment today where tests showed no dementia. He has lived a happy and long life, and is the best thing that has ever happened to me.
    Congratuations!

  11. Beautiful story Elly. Our neighbor Lori had DS. She use to run away from her house to our house, she was a complete joy. Her Mom knew right where she was. She was smart she wanted to be at our house. We had six kids to shower attention onto her and we did especially my older brother Bob. My brother Bob would dance with Lori and she loved it. One day he was playing first base in a high school game. Lori had a visit at the doctors office right next door. Lori ran onto the field right during the game you could hear her screaming Bob do you want to dance? Bob said I can’t dance now Lori I’m busy. Jane, Lori Mom asked me one summer if I wanted a job at Loris summer camp because Lori loved me as a babysitter. I said yes and off I went everyday one summer of my high school life at Smile Awhile Day Camp. I had a blast ! Hugs all day and the stories they shared, I wish I would of written a book about it. While my friends were at Laguna Beach. I was having much more fun! God Bless you, I loved your story.

  12. What a beautiful story, special children are given to special parents whose love knows no boundaries, congratulations to you all and happiness always.

  13. Solid gold. A tip of the hat to the three of you.

  14. Congratulations! I was also 37 when I had Samantha. We didn’t get the testing because I always said I wanted a baby, not a diagnosis. You’ve informed yourself in all the right ways! We never got pity from anyone because we never gave them reason to feel pity – others will feed off of *your* attitude. You’ll have lots of ups and downs in the first year, but it’s totally normal. 🙂

  15. Congratulations! We had a surprise Ds diagnosis after our son was born 2.5 years ago. I thought there was no way I could parent a child with special needs. He has turned out to be the biggest blessing. Best wishes to you all and welcome to the Down syndrome family. There are so many amazing people that are part of this family!

  16. Thanks so much for your story. Our little Will is 7 months old and has Down syndrome. He is the most amazing part of my life and I wish I had known ahead of time all of the joy he would bring in the midst of my worry. You are making a great choice and I am so excited for you to meet your little one! Shoot me a message if you have any questions! We’ve been through a lot of medical stuff!

  17. Congratulations on your baby!! What a beautiful story! My little boy with Ds was born in August. Like you, we had a prenatal diagnosis and wrestled with the decision from a pro-choice perspective. Looking back, I’m so glad that we knew and chose — it allowed us to process everything and get through many of the emotional hurdles in advance. Good luck to you! As you move forward remember to let yourself feel all of the feelings, all of the good and all of the scary ones. Finding joy in a prenatal diagnosis grows your heart in new dimensions and will give you the grace and energy to handle whatever comes your way! Feel free to reach out if you’d like to chat 🙂 lovethatkid.wordpress.com

  18. I am 20 weeks pregnant with my 5th child, a girl and within the last 2 weeks, I found out my quad and free cell said we were pos. For DS we are awaiting our amnio results as a confirmation and trying to pick everything up and figure out where we go from here. I will admit I have cried for the last 3 days, I have 4 beautiful healthy children and this came as such a surprise, I am only 29 no history on either families. Today is the first day I did not cry, and your story gives me hope. I hope that as the days continues my heart grows stronger and I can find a way to reach out to people for more information. We love our baby and onky want whats best and we are in uncharted waters. We live in Seattle, we have no experience with DS or families with childrens diagnosed with that. I hope you writ more, you encourage me to be a braver person. Thank you for sharing.

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