Wednesday, August 17, 2011

One Year Later: A Diagnosis Story.

In August 2010, we received the prenatal diagnosis of Down syndrome for Ellie. This is our story, with the perspective a year brings, as well as a few pictures of the little girl who caused us to worry, to cry, and to celebrate.  I've written previously about the weeks and months following the diagnosis, but this is our first post about how we got the news.

We'd been married for about seven months when we learned we were pregnant.  Morning sickness and exhaustion ensued.  Shortly before that magic twelve week mark when morning sickness supposedly goes away, we were at the doctor for a routine checkup, including a sonogram. 

The nuchal fold measured just above the normal range, and my world came crashing down.

Words like, "heart defect," "Trisomy 13," "Trisomy 18," "Down syndrome" were spoken by our  doctor.  "You can get CVS in order to find out for sure.  We've told you as much as we can here."  She was calm and compassionate, but she couldn't change the situation.

I'm healthy.  At the time, I was thirty years old.  I'd run eleven marathons, and had quit training for number twelve because I was pregnant.  Unfair.

We hadn't been married that long.  We have big dreams to travel and have adventures.  Unfair.

I teach Special Education.  I knew the moment "chromosomal" came up what we were talking about.  I couldn't be blissfully ignorant.  Unfair.

My doctor got the genetic testing center on the phone to set up the appointment with the genetic counselor.  I'd have to miss my first day back at work.  I called work.  I spent a week in tears.  Unfair.

Matt and I went on a mini-vacation.  We tried to relax.

The Monday of testing loomed.  I told the genetic counselor I would not terminate, and she dropped the issue.  I saw "Special Ed Teacher" written on my chart.  The genetic counselor was also calm and compassionate.  She couldn't fix the situation, either.

I opted to have the CVS procedure.  I hate needles.  I cried, and Matt held my hand.  Matt brought me home and got me settled.  I spent the rest of that day and the next in bed.  The following day, I went to work.  The genetic counselor had stated that she'd call around four.  I was getting off the freeway when she called, and she waited until I was home to deliver the results.

"Your baby does have Down syndrome."

One sentence.  Confirmation of what I think I already knew in my heart.  Through tears, I asked the gender.  We'd already picked names.  "Cling to each other," the counselor said.

I texted the friends coming to dinner to cancel plans, and called Matt at work.  "Come home."

I went to bed and cried until he got home, and then said the hardest words I've ever said.  I told him that we're having a girl, and that she has Down syndrome.

"Ellie has Down syndrome."

We called parents, and eventually the few friends who knew that we were undergoing testing.  Very few people knew we were pregnant at 11.5 weeks.

And the world kept turning.  We kept going to work.  We cried, we couldn't feel anything, we cried more.  We learned a lot about Down syndrome, and heard encouraging stories.  We were still scared.

The views on prenatal testing vary widely.  In my mind, the prenatal testing ruined our pregnancy but saved the first few months of Ellie's life for us emotionally.  We had to grow up fast.  We had to talk about things like open heart surgery and lengthy NICU stays.  I worried endlessly about miscarriage.

But when Ellie arrived, we had some brief celebration.  Nothing prepares you for your child being transferred to another hospital, for surgery, for the NICU, but at least we knew.  And the day she came home, the celebration began.  From mid-August of 2010 to late March of 2011, we knew stress and tears.  Her homecoming gave us some peace.

And now, our angel is settled at home.  We seem a decade older, and Ellie is doing well.  We don't parent any differently than our friends with typical kids, but our decisions about our lives seem to carry more weight.  "Will it be okay for Ellie?  Will we be hurting her development?"  We know that right now, she's on track for her age-appropriate milestones, but her upcoming surgery will set her back.  Life is better now than I could have imagined the day we got that phone call.

We still dream big, but instead of one big dream, our big dreams are a lot of little things that we never truly appreciated before. 
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  1. That was beautiful, Megan. Thanks for being so open about your joys and struggles. You are a wonderful writer and your love for little Elle oozes off the pages of your blogposts. I´ll be praying for her upcoming surgery. Big hugs from Lima

  2. What a great post, Megs. And what a wonderful, beautiful journey you are on, even if it has taken you on a different route than the one you had planned. Nothing makes handing your baby over for OHS any easier, and nothing can really quiet your fears until you're on the other side. But you WILL make it to the other side, and you'll see that Ellie will bounce back with the amazing fortitude she's shown every day you've known her. You have our prayers and our love!

  3. Beautiful, Megan. I am always fascinated by people's stories. I don't think I realized you were a Spec. Ed teacher!

  4. Ah! Even after all we have been through in our individual stories and the happiness we are finding, reading this still made me CRY!

    She truly is beautiful and your photos are lovely!

  5. Reading this made me cry and smile all at the same time. Your story is beauitiful and the way you tell it is so full of love it amazes me. I miss you, and I'm sorry I haven't met this amazing little person yet. I have however stalked your blog and feel like I already know her, haha.

  6. Lovely post...and I didn't realize you were a special ed teacher, either. I imagine it must be like my work in Disability Rights/Activism/Employment - a blessing later, but at the time: unfair. Big time.
    xoxo love to you, kisses to Ellie

  7. I am reading this, this morning with tears running down my face. I love your courage and honest. My dearest cousin just had a baby last friday with special needs. Different but difficult all the same. She ironically is also a special Ed. teacher.

    Another mother she knew who has a son who has special needs, sent her the nicest card that came on a really tough day. It said, "Whatever the outcome--I know you will be greatly blessed--not everyone is so fortunate to have a "special child" sent to them."


  8. What an amazing story... my heart breaks and swells with joy for you and your family. You have one exceptionally lovely little girl.

  9. This was beautiful. So honest, touching, and full of love.

  10. I'm here from the blog hop...This post was so very beautiful to read. Your honesty was so moving. You have the most beautiful little girl and going through your posts and pictures it is easy to see how adored and treasured she is.

  11. Ellie is so beautiful! I happened upon a post of yours on baby center many months ago, which led me to your blog. Funnily enough, I think about you from time to time because your posts were always so amazing and loving. I tthought, " that's someone I could be friends with..someone whose child I would love to have play with mine! " as my own daughter is now naps, I wandered back to your blog. And am happy to see that you and Ellie a doing well. She really is a beauty...and though I don't know you or your husband, I can tell that she is incredibly lucky to have gotten you as parents. I guess I'm really just writing to say that you inspire me as a parent! Thank you!

  12. Ellie is adorable! I can relate to the diagnosis ruining the pregnancy but saving the first few months... hadn't thought about it that way before but it is so true.

  13. Thank you for sharing. Children with Down's have a special place in my heart and I know it was not easy to go through or share. She is beautiful and her smile melts my heart! Hugs to each of you.
    I tried your facebook link and it did not work so I hooked up via Pinterest.

  14. I would love to email with you about your pregnancy with Ellie.
    We too were given a slightly elevated NT but I haven't had a CVS or amnio done.
    My email address is
    Thank you for posting this diagnosis story and your birth story. They are inspiring and beautifully written.


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