Monday, October 24, 2011

The Test

Today the test is available.  For those of you that have babies with Down syndrome, you know the test I am referring to...MaterniT21.  This prenatal test is able to detect fetal DNA in the mother's blood as early as 10 weeks into pregnancy.  Ten weeks.  Before you have likely told your neighbor, your best friend, perhaps even your Mom.  Ten weeks.  Before you have really connected with your baby.  Ten weeks.

Why does this concern me?  Because of the way I was told Kayla had Down pointing out what was "wrong" with her.  Because 96% of babies with Down syndrome are aborted.  Because people don't understand Down syndrome...not even the doctors offering the prenatal testing.

Dr. Brian Skotko, an amazing doctor and advocate for individuals with Down syndrome {who also happens to be the brother of a sister that has Downs syndrome}, conducted a study of 3,150 mothers, fathers, brothers, sisters and people with Down syndrome.  Here is just a sample of what he found...
99% of people with Down syndrome said they were happy with their lives
97% of people with Down syndrome liked who they were
99% of parents said they love their child with Down syndrome
97% of brothers/sisters, ages 9-11 said they love their sibling

Here are some of my own statistics...
I love Kayla 100%...every little bit of her...including that extra chromosome
99% of my days are brighter because of Kayla
99% of the time I am proud of her
99% of the time I want to be around her

The other 1%?  Well, she is a five-year-old little girl.  A very typical five-year-old little girl.  Sorry...big girl.  I would definitely be corrected for calling her a little girl if she read this.  The point is, I'd be lying if I said I was proud of her 100% of the time.  Would you be proud of your child for being sassy to a teacher by saying "whatever"???  Probably not.  Or would you be proud of your child for biting her friend on the knee...not so much {and yes, my sweet little Kayla did that apparently because her friend took her stuffed animal}.  So...that's the 1%.
But I'll take that 1% and the other 99%...I'll take it all...just to have my girl.  

So go ahead, doctors, give that test to pregnant women.  But I sure as hell hope you are also giving them information about Down syndrome and connecting them with parents that love their "imperfect" children. The problem is, I know there are thousands of Moms that were met with the diagnosis in the same sad and pathetic way that I was...the "are you sitting down", "are you alone", the "I'm sorry to tell you this"...and my least favorite "let me show you what's WRONG with your child"...To those women that got the diagnosis prenatally and kept their children, I applaud you.  I've said it before but truth be told...I can't honestly tell you that I would not have been one of the 96% of women having an abortion.  Unless you know anything about Down syndrome, it appears to be doom and gloom...even out of the mouths of doctors.

So the problem is this...
If women no longer need to have an invasive amnio to receive this diagnosis, it is far more likely they will find out their child has Down syndrome while pregnant.  It is far more likely that 96% will increase and the number of people with Down syndrome will decrease.

While I never imagined my life as the parent of a child with Down syndrome, I would want it no other way.  Kayla has taught me more in her five short years than I could ever teach another human being.  She has taught me love, compassion, kindness, respect and most importantly, she has taught me that all of us...ALL of us...are humans.  We all are equal.  We all are deserving of nothing less than what we expect out of be happy.

So go ahead...if you are pregnant...take the test...but don't take it to decide whether or not to "keep" your child.  Take it to be more prepared for life as the parent of a child with Down syndrome.  I promise is a life that is more full and rich than you could ever possibly imagine...for I could never imagine my life without her...

Thanks for reading and I'd love to hear your thoughts...


  1. Everytime I see pictures of you little girl, my heart just melts. She is absolutely stunning, extra chromosome an all. And she has a rocking wardrobe. Kayla, you and Fiona are going help change minds :)

  2. LOVE it you are soo good with words, I feel this same way but in NO way could form them into an art like you did:) Rock on Kayla and Sydney!!!

  3. While I knew the test was coming, I had no idea today would be the day...
    I think back to the day of delivery, the nurse still "massaging" the placenta out of me and some young, never-had-kids-of-her-own pediatrics intern coming over to ask what kinds of tests I had had during pregnancy. My thoughts, while shivering and still reeling in pain due to a very short labor (25 minutes) and not having the options of DRUGS, were "does it really matter...idiot?! I just want to hold my baby!"
    But no, they wanted to proceed with telling me all the "tell-tell" signs that my baby has Down syndrome. What new mother (in pain I might add) wants to hear this!?!
    Now, two years, 10 months, and 8 days and 22 hours later…I could not imagine my life differently!
    Has it been hard to have a child with special needs? Yes, but having ANY child has its challenges. Whoever said parenthood was easy anyway…and if you find it easy then I shudder to think of the job that parent is performing.
    I have thought long and hard about the idea of what I might have done had I known and my conclusion says the same, I am neither the giver nor taker of life. God has not necessarily chosen me for Nicholas’ mother, but he is enabling me each day to be the best Mommy I can to him.
    If not for Nicholas and Jacob, my life would be a lonely and possibly selfish one. That is not the life I would want…I am trying to live each day in the moment. Please, if you are a mother considering your “options” consider the love of a child…because that is what you will get. A child, a child that will love you like you have never known!

  4. Amy, I applaud you for your words on behalf of the Down syndrome community. I too can not imagine my life without either one of my girls. I cringe everytime someone asks a pregnant woman...what do you want...girl or boy??? My response was always, it doesn't matter, because it really didn't matter. I refused any genetic testing with my oldest (now 9) because God blessed me with MY child that he wanted me to have. I only had testing (no amnio) the 2nd time because, I had so many issues, not really complications, but my thyroid disease was a concern, and we wanted to know if anything was wrong, and I was older(38). The test came back and they were all very very slim chance for anything out of the ordinary. It would have been "Ok" if we had known in advance, the decision would have still been the same. This is our daughter and this is what God has blessed us with. To decide to terminate because a child has Down syndrome to me is like deciding to terminate becasue you wanted a girl and are expecting a boy, or you want blond hair and blue eyes and are getting red hair and green eyes.
    In my opinion that is a selfish act.
    No doubt being a parent to a child with special needs is scary, but not for the reasons someone would think. It's scary because society does not always embrace these beautiful people with loving and open arms. They view them as "broken", and that breaks my heart, because what parent does not want to keep their child from harm or from being hurt? That's why it is so important to educate and fight and advocate and be the voice. The more I read about Down syndrome, the more I think, OK, we can do this. A few more doctor appointments here, a few therapy sessions there, we can do this. Even doctors aren't educated enough on the subject,and they are your go-to source. It's scary the information that is given, and not the reality of what is lived. Even my baby-doc (who I love) said to's been almost 4 years since I've had a new patient with Down syndrome, I need to ask my colleague because treatments and stats have changed. I respected his honesty and together we treat my daughter like a PERSON and not a condition. There are some valuable resources out there for new and soon-to-be NEW parents of babies with Down syndrome, I pray they search out these resources before they make one of the biggest decisions in their life.

    Continue to advocate on behalf of those that have, love or know someone with Down syndrome or need a sister always says, When God wants a voice for Down syndrome, he gave it to the person with the biggest mouth I know. (Yes, I take that as a compliment.) Adrianna and Avary are my world. Avary has made me LIVE my life instead of just living life.

    I never asked "why" in pity, but "WHY" did God trust me with this awaesome responsibility? I don't ask "why" anymore, I realize that God doesn't make mistakes, and my children are perfect with or without an extra chromosone....just the way God intended.

    Vanessa & Avary Cannon Seaford, DE

  5. i couldn't agree with you more! as the brother of someone with Down Syndrome, i could not imagine my life without my beautiful, kind, and loving sister.

    and adorable pictures!

  6. Hi Amy,
    I'm unsuccessfully tried to find an email for you on your blog... I hope it's OK to leave a comment. I'm a publicist interested in sending you a new book about raising a child with Down syndrome--it might be something you'd be interested in reviewing on your blog. If you are, would you please shoot me an email so I can drop a copy in the mail to you?

    Many thanks!