Tuesday, October 15, 2013

How Did It Happen?

When people find out about Liam having Down Syndrome, they always have questions.  "How did it happen?"  "How did they miss it?" 

When he was conceived, I was healthy.  I was 32.  I didn't drink or smoke or do drugs.  Ever.  I exercised 4-5 days a week.  I ate well.  I was thin and fit.  I was taking a prenatal vitamin.  I had three healthy pregnancies and three healthy children.  I had absolutely no risk factors. 

Liam was created that way the moment he was conceived. During fertilization, there was an unequal division of cells. It occurred by chance.

Chance.

Grant and I made the decision in all of our pregnancies to skip the first trimester blood test that tests for Down Syndrome. We made that decision because we knew we would not end the pregnancy if our baby had Down Syndrome.

At our big ultrasound, the ultrasound tech noticed that the baby had an echogenic cardiac focus.  Basically, it is a calcification in the heart that is present in up to 5% of normal pregnancies.  This can be a soft marker for Down Syndrome, but there are usually other markers and risk factors involved. Lily had an echogenic cardiac focus as well.

I didn't have any risk factors and Liam didn't have any other markers.  The measurements of his arm and thigh bones, the gap between his big toe and the second toe, and the nuchal fold were completely normal. The ultrasound tech and the doctor that reviewed the ultrasound double checked everything. They said that our baby looked "textbook perfect."

We were told that his chance of having Down Syndrome was 1 in 591 (That number stands out but it could be another number in that range).  They told us that they were not even worried about it, but if we wanted the amnio done to relieve our worries, we could do so.  Grant was worried, but the chance of having a miscarriage due to the amnio was much higher than the chance of having a baby with Down Syndrome.

We chose not to have further testing done. We would not have ended our pregnancy, especially after falling in love with the baby we saw on the ultrasound, so we didn't want to risk anything.

Looking back, I'm not sure if I would have wanted to know.  I would have spent the entire pregnancy worrying about everything that could go wrong and feeling depressed.  Instead, we were handed our child and a surprise diagnosis at the same time.  Once the shock went away-and it went away quickly-we were able to accept and love him fully.

It bothers me when people say that they're sorry after they hear that Liam has Down Syndrome.  Why would you be sorry?  He's our son.  He's a joy, a blessing, and a gift from God.  He is every bit as miraculous and amazing as his older siblings.

He may look a bit different, but he is healthy and happy and brings us joy.  Isn't that what every parent wants?

My 6 year old said it best.  After the Dash for Down Syndrome, I asked the kids if they had noticed all the people there with Down Syndrome.  Lexie responded, "No.  All I saw was people."

Chance.

Our chances were ridiculously low, but the truth is, everybody is a statistic.

Liam just happens to be ours.

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25 comments:

  1. Thank you so much for sharing your story publicly and privately to me via email. Liam is such a very lucky young man to have such an awesome family. Chance brought you all together and nothing should ever take that away from you all:-)

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  2. Lexie is awesome! I knew this before. However, she is shining even brighter now! Her wisdom at the age of 6 is fabulous. She is going to be Liam's right hand woman forever!

    I cannot wait to get some squeezes from him this weekend. And Lexie too!

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  3. I love your daughter's comment. I bet you were proud with that. I know I would be.

    We have close friends whose baby has a heart defect. There is a strong likelihood he has down syndrome based on the type of heart defect he has. We will meet him - god willing - in a few short weeks and already know he will steal our hearts!

    Liam is beautiful and he is lucky to have such a great mommy!

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  4. Liam is a blessing to your family, just the way he is!! I have never been sorry or felt sorry for you, all babies are miracles. I have have nothing but excitement as I watch him grow and develop!!!

    The only thing different about Liam is that he was born into an amazing family. Unfortunately not all parents/family are so accepting of babies, children, adults with disabilities. You will learn amazing things from Liam, but people also will learn from YOU too!! xoxo

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  5. He IS indeed perfect!
    And I am most definitely one person you will NOT get comments from saying "I'm so sorry" about this amazing little guy's diagnosis - he is a beautiful blessing that I can tell from all that you share about him already has changed your's and your family's lives for the better in so many positive ways!

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  6. Beautifully written. Liam is so handsome!

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  7. What a beautiful post! Your Liam is a true gift!!!

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  8. well said my friend. he definitely is perfect! and was blessed w an amazing family

    xoxo

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  9. And all I keep thinking is.... God doesn't make mistakes.
    xoxo <3

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  10. Beautiful! What a blessing he is :)

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  11. Love how simple kids see life. :-) Its just perfect.

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  12. You are so brave to share this story. We didn't get the test for DS done either, although it was something we both worried about. My husband always said if something did end up happening with our baby girl it would be because go believed we would be strong enough to handle it. I wish all of us could see the world through a childs eyes!

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  13. I lost my cousin Todd in 2005. He had Downs Syndrome. He was 45 years old when he died. And my heart broke.
    Growing up we spent time together each week. My aunt was a supporter of the Special Olympics the day it started. She taught Todd to care for himself as best he could; she was an older mom who knew he'd outlive her and she wanted to be sure he was taken care of and could take care of himself.
    When Todd died, he'd been living on his own for many years, in an assisted living scenario (his own roomie, with a trainer in the next apartment), working and supporting himself, doing his own food shopping and laundry.
    Was his life really any different than mine? Yes, because he knew only love and kindness. He didn't know he had to worry about things like voting, or taxes, or keeping up with the Joneses. He was happy for all 45 years of his life and he brought joy to us each and every day.
    I know Liam will do the same and more for every day of his life. Thanks for loving Liam and for writing this post. I hope millions of people read it.

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  14. I am sitting in my kitchen crying about what Lexie said. What a beautiful response and a response that I wish all children had. Liam is a gift from God and is so so lucky to be part of your family!! He is perfect and I am excited to watch him grow!!

    Kate @ Raising the Rogers

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  15. I replied on FB and not here. But I love your post and what Lexie said. So amazing!

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  16. I just stumbled upon your what to expect article and then went to your Facebook page and landed here. I too just had a surprise delivery of a Down's syndrome baby boy. As I read your articles and go through the motions like you did I would not change anything. My son is almost 6 weeks old and is the joy of my life! I did do the first trimester screenings and they were all normal. Even if they weren't it would not have changed anything. Yes there might be more bumps along the road for us as a family but I still wouldn't change a thing. Thank you for sharing your story.

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  17. Another amazing post, Stefanie! Liam is so lucky to have you for his mama.

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  18. What a blessing that sweet boy is!!!
    I am so happy you are sharing with us.
    He is such a blessing. WE are all so excited to see him growing strong & how much joy he is bringing your family!

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  19. I love what Lexie said. And your sweet Liam is perfect the way he is and absolutely in the perfect family for him! Praying he's doing okay with his hospital stay.

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  20. In the last three years, I've had people ask me:

    -is she retarded?

    -what's wrong with her?

    -were you drinking when you were pregnant?

    -doesn't it bother your other kids that she's different?

    -wow, it must be hard to have a kid like her

    -etcetcetcetc

    After three years I've gotten pretty inured to the questions and comments. Especially because Liv is absolutely perfect. I can't even explain how amazing she is, how much she's changed our family for the better.

    God GAVE her to me. She's not a burden, she's a gift. Just like my other kids are gifts.

    Liam is perfect. For you, for your family. Can't help but be blessed by that. :)

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  21. Liam is beautiful!!!! What an absolute blessing. This is a great post and important for people to read. You have a family filled with so much love! That is all that really matters in this world my friend! Enjoy every moment! :) Big blog hug! Have a great night!

    Mama Hen

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  22. I have a Liam...and your precious one is every bit as perfect as mine! God's miracle both! My pastors daughter has a Downs Syndrome boy. They are missionaries in El Salvador and that little man is the joy of their hearts.
    You are truly blessed!
    Desiree

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  23. Have you read "Welcome to Holland"? It's beautiful and Liam is a wonderful gift from God! http://www.youtube.com/watch?v=r15PuYoID94

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  24. What a beautiful post. Very well said.

    I had wondered if you had the testing and it was just missed, or if you chose to forgo testing. I am someone who always needs to be prepared, so I always did the testing. But, after reading your post, I can better understand how and why someone would forgo the testing.

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  25. You are truly blessed! Hugs sissy!

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