Thursday, September 22, 2011

Down Syndrome and Abortion

It is estimated that 90-94% of women who receive a prenatal diagnosis of Down syndrome have an abortion.


90-94%

The number is staggering.

But I will not point my finger at the women who have given their babies back to God without ever meeting them. Why? Because I understand. I know how they feel. Although abortion was never an option for us, I still wrestled with the exact same feelings these women had. I cried bitterly wondering why we had been given a “broken” baby. I didn’t want Nichole. Deep inside I wanted her to die. Can you believe that? I wanted my baby to die because I was so scared.

I was so scared.

So scared.

I had more questions than I had answers, and everywhere I looked Down syndrome seemed like a life sentence for my daughter…and for me.

When you are pregnant, and your baby has a possibility of having Down syndrome, doctors respond. Their response is not a welcoming response. They do not offer up to date information, or to connect you with other parents that have children with Down syndrome. They do not even talk about Down syndrome beyond their medical experience. No. What they talk about are more tests. They talk about a “choice,” and they talk about making that choice now! In addition, when they talk about Down syndrome and how it will affect your baby all we hear is a doomed medical condition in which our children will suffer greatly, because so many things could go wrong.

Before I had Nichole, I was ignorant about what Down syndrome meant. All I knew was a stereotype, and the stereotype I knew threatened my family, my unborn baby, and me. Professionals, somehow, seemed to confirm these fears.

Nichole’s birth is stained by the many tears and emotional distress I had over her diagnosis. That small extra chromosome had enough power to knock me down multiple times a day. I believed I was not qualified to be the mother of a child with special needs. I wondered, in my fear, if I would ever be able to love Nichole.

But love her is exactly what I did.

The fear, the questions, and the anxiety were moved to the side. I held a baby in my arms. A round faced, soft skinned, button nosed, bright-eyed face that captivated me. It was as if she had power over my heart. Love, joy, and peace became evident in my life; their aroma filled me with a strength I never knew was in me. She challenged me in the things I held as important, as valuable in life. Nichole transformed me.

Nichole is so much more than her medical diagnosis. She is so much more than any limitations she might have because of Down syndrome. She is an individual, with unique gifts, talents, and abilities. Her life has meaning, it is valuable, and it is hers.

I wish I knew then what I know now.

A sentiment that resonates with most parents of children with Down syndrome.

I wish I knew then what I know now.

Because what, exactly, determines the value of a life? The value of a child, any child?

Should the value of a child’s life be reduced to their academic performance? Then why is the life of a child with Down syndrome held to this standard?

Should the value of a child’s life be reduced to their medical conditions? Then why is the life of a child with Down syndrome held to this standard?

Should the value of a person’s life be reduced to the job they will have? Then why is the value of a person with Down syndrome held to this standard?

What makes our hearts beat? To love and be loved…unconditionally. To celebrate life. To experience joy in everyday moments. To have a heart that overflows with thankfulness. Isn’t this what we all long to experience in life? Wouldn’t the challenges be worth the rewards if we discovered that we had loved to our fullest, that we had been given unconditional love, and that we had celebrated life?

90-94%

Nevertheless, there is that 6-10% that wants you to know something about having a child with Down syndrome.

You will experience shades of color that you never knew were possible. Your heart will expand a thousand times over .Your tears and fears will be replaced with gratitude for the child you have. There will be so much love.

And there are more statistics.

If you want to adopt a child with Down syndrome in the United States there is a waiting list. A long waiting list. For every child in the United States born with Down syndrome that is given up for adoption, there are instances where 300 families have stepped forward wanting to adopt that child!

Each year hundreds of children with Down syndrome are adopted internationally. Hundreds!

Why? Because some families have discovered what it is like to live life every day, every single day with someone who has Down syndrome. And that life is beautiful. That life is rich. That life has been an unexpected gift.

You don’t have to be one of the 90-94%

You can be one of those who discover these precious mysteries in life.

We are living and loving life with Down syndrome.



(Note: Not all medical professionals approach a diagnosis of Down syndrome in a negative way. There are some who offer expectant parents resources and connections before assuming the pregnancy will be terminated)


If you want to know more about our journey and diagnosis with Down syndrome, you can read about Finding Nichole. An article I wrote for Thriving Families magazine where I share about becoming the parent of a child with special needs.

11 comments:

  1. I have seldom seen this awful truth put so gracefully and charitably. I am glad we found each other on Facebook. I am sharing this masterpiece!

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  2. My word, Ellen. This is an amazing piece of writing. I am going to go plaster it all over the internet now!!!

    I am so grateful to know you.

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  3. Ellen, you are such a wonderful voice for all the children in the world with Down Syndrome (and other special needs). A friend told me recently that she had learned as an adult that her mother had terminated a pregnancy due to a Down Syndrome diagnosis. Do you think the statistics have improved at all since the 1970s? Are prospective parents and their doctors any more educated now than they were then?

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  4. This was beautiful and your daughter is as well. Thank you for sharing this with the world

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  5. Marnie, some things have changed, but some have not. What is different is that as parents we feel empowered. If a doctor comes and tells me Nichole "will never" I can confidently challenge those misconceptions that unfortunately are still prevalent in the medical community. More and more as parents we are giving a voice to our children, and there are young adults now that are able to be a voice for themselves.

    What is sad is that many doctors still present a diagnosis of DS as something that needs be be "taken care of." I know of many women who have terminated their pregnancies only to regret it and grieve for a baby that was taken without ever givena chance to find out what life would have been like.

    But I think we are being heard. And we support one another. The support in the Down syndrome community is incredible. There are no words to describe it. We are close.

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  6. I love this post! I feel the same exact way and my little one with DS is only 6 months! She has changed me forever, and we couldn't imagine life any other way! I received a prenatal diagnosis with her last November on a Monday. By the end of the week, I received Thriving Families magazine with your article in there on adoption. After reading about your family in there and having a child with DS, I knew I wasn't alone. The article came at the right time! Thank you for your inspiration!
    Heather

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  7. Anonymous5:55 AM

    I'm glad you added the bit at the end, noting that not all physicians approach DS negatively. That's exactly what I was going to comment about! :-)

    My sister received a prenatal diagnosis of DS and she was very set on the idea of terminating the pregnancy.
    Her physician really encouraged her to do some additional research before terminating.

    He provided her with the phone numbers of two patients, both of whom have children with DS. They volunteered to talk to women about birthing and parenting a child with DS.

    My sister was very much in favor of terminating the pregnancy -- primarily due to fear and self-doubt in her ability to parent a child with DS -- but she felt it was appropriate to investigate further, even if it was only to justify things in her own mind, so she could say, 'I investigated my options.'

    But those other moms changed her life. She spoke with these mothers, she even met one mom and her daughter in person. She realized that her fear and self-doubts were not unique; she was very encouraged when she found out that these other parents experienced the same thing. Exactly as you've described here, Ellen.

    My sister now volunteers as a mentor to other women who receive a prenatal DS diagnosis. She has discovered that many, many OBGYNs were willing to give her card to expecting mothers. In fact, many have said "I wish I had found you sooner!"

    She is an incredible mentor to expecting mothers. I'm so, so proud to call her my sister.
    She's honest and frank. She does not sugarcoat things. Nor does she encourage mothers to make a particular decision. She simply provides information about her own experiences as a mother of a child with DS.

    If I could say one thing, it would be... If you're a mother of a child with Down Syndrome, consider helping other moms who receive a prenatal diagnosis.

    Make up some business cards and a letter, explaining that you're available to share your experience with other mothers who learn their baby has DS. Bring a few cards and a letter to local OBGYN offices.

    My sister also included her website address on her business cards. She runs a website, where she published her story, facts about DS, and she publishes answers to reader questions.

    Why do all this? My sister fully intended to terminate her pregnancy. She fully realizes that she nearly missed out on her beloved daughter's life. She nearly missed out. It was so close.
    She's so thankful that another mom was willing to take the time to share her experiences, so now she wants to do the same to show the universe how thankful she is for her daughter's existence.
    I'm so proud of her. :-)
    -Madi

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  8. I don't know what else to say other than, this was beautiful to read!

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  9. Madi, thank you for sharing about your sister and her expreince. These are the stories that need to be shared. Your sister does sound incredible and sounds like her daughter has given her a passion and determination that make other people take note. Incredible what our children can do in us.
    And those doctors who really take time to help moms are rare, but precious jewels! They sure make a difference!

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  10. that is all so correct...
    my youngest has DS and the info we were given was like from 1985 or something...all never never never! Ugh...
    sometimes the guilt I feel is overwhelming, because we almost didn't have her, but now we're part of the 10% and I hope that new moms are encouraged by Brooke..

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  11. What a wonderful article! Several times a week I walk out of a store, or public place and ask myself, "Who are these 90+%?? Where are they??" I ask it because everywhere I go with my little girls (ages 3, 3 & 2, all with Ds - adopted from Ukraine with the help of Reece's Rainbow ;) they are met with smiles, sweet comments and downright adoration. From men and women. It makes it hard to get my shopping done, honestly. I'm not saying the 90+% aren't out there, it just seems like the vast majority of people who see my daughters, fall in love with them. And I admit, when I see a pregnant woman, I go out of my way to make sure and walk down her grocery aisle with the girls ;)I want the whole world to see what life with a child with Down syndrome is really like. If it were so scary, would I have THREE?? ;) They are the light of our life!! That being said, I never had a prenatal dx of Ds, so I really appreciate your candor in describing your personal experience, your fears and grief. Not having been in your shoes, I'm afraid I may not have been as understanding or compassionate as I should. I chose to parent children with Down syndrome, and didn't honestly understand how a mom could be sad about it. I appreciate the much-needed perspective.

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