Sunday, January 8, 2012


My subscription to Reader's Digest recently ran out, so there are only 2 magazines that actually come to my house. Both of them are free, otherwise, they wouldn't come either. One is a local homeschooling magazine that I rarely read because it just makes me feel guilty and the other is a magazine that I devour, not because I necessarily agree with all it represents, but because I find it fascinating.

It's called Above Rubies, self published by Nancy Campbell, and its stated purpose is to encourage mothers. There's a whole lot about eating organically healthy and other things that I tend to skip over, but I really enjoy the personal stories from her readers. Many of them have a certain "I've got it all together" tone that I find annoying, but it rarely makes me mad.

Until now.

This issue, there is a section of personal stories about women receiving the "Wrong Diagnosis" while pregnant and how they responded. The first story sent my normally very low blood pressure through the roof. Of course, the "diagnosis" was Down syndrome. They used the term "diagnosis" very liberally as most of the women simply had the early blood screenings which indicated they had a higher risk of Down syndrome, and declined the actual testing that would have given an actual diagnosis.

Of course, because of their prayers and faith, they did not have a baby with Down syndrome. 

I wrote a letter to the publisher. I haven't received a response. Shocking.

Dear Nancy,

I am a long time subscriber and avid reader of Above Rubies magazine. I usually devour the magazine from cover to cover as soon as I get the chance. Issue 83 was no different for me. To say I was disappointed is an extreme understatement. From the moment I read your intro in the section titled "Wrong Diagnosis",  I had a bad feeling about where it was going. While a bit inaccurate (no physician would encourage termination for Down syndrome without a confirmed diagnosis), you are correct that the medical community does indeed often push for the termination of Down syndrome pregnancies. In fact, the current estimation here in the US shows 92% of confirmed Down syndrome pregnancies are terminated. I have one friend who was told of her positive amnio results and immediately informed, "I will call and schedule your termination for as soon as possible." When she adamantly declined, her obstetrician's office phoned her THREE more times to inform her that she was running out of time to legally abort. It is a travesty.

However, when I read the individual testimonies, my heart sank. It is no wonder to me that the world finds little worth in individuals with Down syndrome, when we in the Body of Christ believe it is something to "fight and pray" against (My Prayer Warriors) and that only babies born without it are "perfect" (My Prayer Warriors) and "healthy"(Infertile!, I'm Glad We Didn't Listen). I found the tone of some of the articles to be bordering on arrogant, indicating that the reason their babies were born without Down syndrome is because of the prayers they offered or the attitudes they maintained during the pregnancy. I think that kind of thinking is not just offensive to me, but also to our Heavenly Father.

Here is my story: I have always refused the routine blood tests which screen for things like trisomies, spina bifida, and cystic fibrosis. I know that these are not definitive tests and the only way to be sure is to have an amniocentesis or CVS. At the level 2 ultrasound for baby #6, the technician thought she saw something of concern with the baby's heart. Because of my age, 38, I was sent to the maternal fetal specialist for another scan. There, the heart looked fine, but the bowel on our baby boy looked bright, a marker for Down syndrome. I was offered and declined an amnio. I rightly assumed that our baby was being fearfully and wonderfully made in the secret place of my womb and went on to enjoy the pregnancy. 

At exactly 39 weeks, I gave birth to a 7lb, 10 oz perfect and healthy baby boy, who also has Down syndrome. We are very proud of our son's "designer genes"! We know that he was indeed fearfully and wonderfully made and created in the image of an Almighty God. At 3-years-old, he is very much more like typical kids than different. He enjoys playing cars and wrestling with his older brothers and he is as gentle as a 3yo boy can be with his baby sister. We like having him in our family so much, that we are moving forward to internationally adopt another little boy or girl with Down syndrome. 

I wish people in the Church would get educated. I wish that they would seek information to see beyond the common myths associated with Down syndrome. Our son is not an "angel". He is most certainly not "happy all the time". He is not "downs" or "mentally retarded". He's a little boy who happens to have an extra chromosome. Because of that, it takes him a little longer to learn things that come easily to other children. He will learn to read, ride a bike, and, hopefully, drive a car. Young adults with Down syndrome are attending college, working meaningful jobs, and even getting married. We have high hopes for our Simeon. But, even if his intellectual disability causes him to live with us as an adult, we know that we have been given a gift and we are forever grateful. 

I hope that we will see more positive stories of people and children with disabilities in your magazine in the future. I hope that you will join us in working to remove the fear associated with parenting a child with special needs. Not all the gifts that God gives look the same, but the joy and the rewards are completely worth the challenge.


I'll let you know if she responds.


  1. please do!! keep us updated! I do not think there is an overreaction are educating society of your experience and that is priceless! and the only way that perception changes...I think writers should know there audience...great letter! smiles

  2. Wonderful letter! I'm thankful to have learned so much about Down Syndrome from you & others that share your wonderful blessings with us. I probably never got onto the Rubies magazine because of my infertility and I guess that was a good thing. Just the title of that article makes my hair stand up. I hope you get a response but assume you aren't holding your breath about it. :)

  3. You rock sister! Great response! Can't wait to hear the follow up.

  4. what a fantastic letter!


  5. Now yer talkin'!!! Terrific writing. It's amazing how many people don't understand between a "screening" and a "diagnosis".
    Don't ever give up on educating the public. I just had to inform the Children's National Medical Center (in D.C.) that they needed to edit their webpage that said, "Downs children". What?
    I find it easier to forgive those who genuinely don't know and understand terminology and science, but, really? The Children's National Medical Center? Fortunately, I got quick action and a really good apology. Hope you get the same.

  6. Very well said Tara! I hope you hear a positive response back!

  7. Thank you! I get that same magazine but I haven't read it yet. Thank you for writing them a response. I did get an amnio after a level 2 ultrasound but felt then and now (he's 2 mos old now) that my baby is a wonderfully and fearfully made gift from God and am so thankful EVERY day he was entrusted to us!

  8. I think what you wrote was perfect, I would have done the very same thing! Keep us posted on if you get a response!

  9. I love your letter! And I hope you get a response!

  10. I'm proud of you. Well Written. I hope they respond in a positive way, but even if they don't many have read and will read this blog. You go girl!! Mom

  11. Wow! Your letter is exceptionally well written and thorough. Awesome job. I hope you get a response AND an invitation to write an article. Wouldn't that be great :-)

  12. AWESOME, TARA!!!!! I used to get the mag, I am surprised at the article :( I hope they do respond to your letter!

  13. I am so glad you spoke up, I can see why the article would put you in a bad mood, I like to think Meghan (who I gave birth to at age 41 without any prenatal testing besides ultrasounds) and Kara and Amanda (adopted as you know) are exactly who they should be. In the last 11 years since Meghan's birth I find a few things people assume about my second oldest daughter annoy me. That she is an angel, that I am so lucky Down's kids are always so happy, etc. Meghan, an angel, um, no, she can be so sweet, but also very rotten, like any other child can be. While we fight for our children to be a part of society without common misconceptions, we also need to be careful not to shout how much better than they are from other children. They are just children with extra chromosomes, we love and adore them ( like we do all of our children) and as you say, they take longer to learn some things, but then lots of folks do...

  14. Tara, I'm just seeing this now, but that section of AR made my blood pressure go UP! I am SO GLAD you wrote!!!