Sunday, June 12, 2011

What's it like? (Part 1)

Someone recently asked me what having a child with Down syndrome was really like. She freely admitted that when they were considering having kids, they stated they would terminate if found to be carrying a baby with Ds. She did clarify that, after having kids, she is appalled at having had that thought.

When people ask me about Eon, I often don't know how to describe my feelings toward him. I certainly don't want to present the idea that I love him more than the other kids. I don't. Yet, there is something special/different about my feelings toward him. My friend, Mary Grace, sums it up perfectly in describing her relationship with her own child with special needs. "He has my heart in a way the others don't need to," she says.


I'm sad that the world is sold a bill of goods when it comes to special kids. I've heard women say that they couldn't handle parenting a child with special needs because of finances, lack of support, or because their life was already too complicated. 

These poor women will never know what they are made of. They will always see themselves as weak or as victims.  They will never experience the joy of plunging in and learning the water is neither as deep nor as scary as they once thought. They will never come to the realization that, while sometimes the water is murky, there are moments of great clarity and supreme beauty. They will only know that they ran from fear. And a small piece of them will die, too.

It makes me sad.

Currently, Down syndrome is diagnosed during pregnancy one of two ways: CVS or amniocentesis. Both tests are invasive and both carry a significant risk of miscarriage. There are screenings that are done through a blood test, but they only convey odds of T21 and are incredibly unreliable. The only way to know for sure is to have the invasive testing or wait until birth.

Until now.

All of my friends in the Ds community already know about this, but a new prenatal test for Down syndrome has been introduced in Great Britain. It is a simple blood test given around the 12th week of pregnancy. It is reported to be about 99% accurate in predicting Down syndrome in utero. It should be available in the US by April of next year.

I find this terrifying.

Currently, there is a 90% termination rate for confirmed Down syndrome pregnancies. Keeping in mind there are many women like me who know they have increased odds, but refuse the testing, this number is still unbelievably high. Many, many women are simply surprised at birth to discover their new baby has Ds. They either declined the screenings, or the screenings showed they were at low risk.

What will happen when testing for Down syndrome becomes routine and women discover, perhaps before they've even announced their pregnancies, that they are carrying a baby with Down syndrome? I'll tell you. They will abort in ever increasing numbers. The number of babies with Down syndrome born each year will drop dramatically.

It breaks my heart.

These babies are being targeted for termination. Don't let anyone tell you that this testing is to help expectant parents to prepare. That is a wonderful side benefit for those who choose to carry to term. But that is not the intent of this test. It's just not.

I've heard too many stories of my friends with a prenatal diagnosis (and many with just increased odds) being pressured to terminate. I've read too many comments on articles about this, denouncing the "cost to society" those with Down syndrome represent. (Lest you think I'm being dramatic, I calculated the ratio of positive to negative comments about Ds on a mainstream article. It was around 1:8...for every one positive comment, there were eight negative ones, usually focused on "suffering" and "burden".

(To be continued...


  1. "he has my heart in a way the others don't need to." love, love, love this!

  2. I LOVED that Quote as well! It sums up how I feel perfectly...I don't love Russell more than the other kids, but I know I love him in a different way, a way I cant describe! Thanks for sharing this :)

  3. I have been thinking alot about the whole testing before the baby is can test for Ds, CF and others...I am not sure if any mom of a special need child is excited about these tests...but I am excited to here...I found out in my 5th month that Maddie would be born with Ds...I tooled with so many emotions...and I liked the control that I thought I had when it came to the decision...but I was not in my right mind to make that decision...I was not in any way rational I was emotional...I finally I asked myself if I could live with the decision forever and still have a marriage...and that answer was no...I was just scared but not incapable...I remember Chad telling me he was excited to be Maddie's dad...that sealed the deal...and I already loved her...I was scared and angry but I loved her...and now I am against prenatal testing...Chad disagrees and we have GREAT discussions about it! I am open to the discussion...just not willing to give my baby a second rate life because I was to scared and ignorant...but as Maddie grows so do I...and I learn everyday that I made a perfect decision for our family...smiles

  4. "he has my heart in a way the others don't need to."

    Oh my gosh! I love this one too!!!

    And yes, this test frightens me to know end. Our children will become endangered species. :(

  5. Tara, it was great to meet you and talk with you about your children, especially Eon. You are a very special woman with special gifts. I love the work God has done in my heart that prompted this post and should He feel I am in need of a Ds baby, I know I can turn to a loving community of support! Thanks again for being YOU and showing Christ's love transparently.

  6. I just wanted to thank you for posting about Reece's Rainbow on the Sonlight boards sometime last year. I hopped over to see the website and--well. I'm a 5/5/5 warrior for Valentin now. See what happened? ;)