Parents of Children with Down Syndrome Should Know That They Are #NeverAlone

Parents of Children with Down Syndrome Should Know That They Are #NeverAlone

I was alone when I found out Wyatt had Down syndrome. And I mean that literally: I was alone in my house. Less than a week earlier, my husband had deployed to Afghanistan. We knew that our odds of having a baby with Down syndrome were 1 in 6. He left the decision on whether or not to get an amniocentesis and know for sure up to me, and I just couldn’t go the rest of the pregnancy not knowing. I got the amnio two days after I watched him get on a bus to go to war, kissed him goodbye and hoped it wouldn’t be the last time. And three days after that, I got the phone call that would change my life forever, alone in my house, with no one to help me through it. My family and best friends were hundreds of miles away in our hometown. My husband was at war. And my world had just been shaken to its very core.

Luckily, I had one of the good ones — doctors, that is. My maternal-fetal medicine specialist was great. He never pushed abortion on me, he never gave me outdated and negative stereotypes. Instead of giving me the news and leaving me floundering on my own, he offered me resources and told me he would help me get in touch with the local Down syndrome support group. Instead of telling me about all the things that my son wouldn’t be able to do, he talked about how he would be playing soccer in five years, and joked about how squirmy he was during ultrasounds. I appreciated all of that, more than I can possibly say, but it didn’t change the fact that I still cried for literally days on end, and it took me weeks to stop being scared and finally accept the diagnosis.

But what if my doctor hadn’t been so great? For most women, that’s the reality. Most women with a prenatal diagnosis of Down syndrome do not have the experience with their doctor that I had. We all have those same emotions in common, whether we find out prenatally or at birth. Shock, fear, sadness, grief, anger, dismay, denial. It is one of the hardest things to go through (even though later you end up wondering what, exactly, you were so upset about). The medical establishment, rather than finding ways to assuage your fears and reassure you that your child is still just that, your child, and telling you all the things that they’ll be able to do, seems hell-bent on confirming your worst fears. Studies have found that doctors routinely give women negative information, and pressure them to have an abortion. Women are told their baby will never walk, that they won’t be able to go to school, that they’ll never work or live on their own. Oh, and did they forget the mention the litany of health problems you’re going to have to deal with? Yeah, there’s a giant laundry list of them. So there you have it, you’re cursed with a defective baby who will never amount to anything and cost you thousands of dollars in medical bills! Would you like to talk to someone about termination?

And yet we wonder why the abortion rate of babies with Down syndrome is so high. Is it not obvious?

Mark Leach points out just how poorly the medical establishment handles a Down syndrome diagnosis:

Parents have long described receiving the diagnosis negatively. A study of moms reported awful stories both pre- and post-natally. A study just last year reported that parents have a negative experience by a ratio of 2.5 to 1–so for every 100 sets of parents who had a positive experience with their health team, there were 250 who had a negative one.

And, here’s the kicker, the medical establishment knows this.

When the standard changed such that all women are now to be offered prenatal testing, a survey was done to see how OBs were complying with the change. It found while almost all had changed their practice and were offering prenatal testing for Down syndrome to all of their patients, only 29% were providing educational materials. So, for every 10 patients receiving a prenatal test result, at best 3 were actually getting information to take home with them.

Your baby has Down syndrome. They have no future. Would you like an abortion?

Because of this, the National Center for Prenatal & Postnatal Down Syndrome Resources has launched the #NeverAlone campaign. Parents shouldn’t have to walk this road on their own, fumbling blindly through the darkness. Massachusetts is one of several states to have passed a law to change this — a law that abortion advocates fought tooth and nail against, by the way — which required doctors to give women with a prenatal diagnosis accurate, up-to-date, unbiased information about Down syndrome, along with information from local and national Down syndrome groups, and must also be given contact information for First Call, which links parents just receiving a diagnosis with a family of a child with Down syndrome. Why does every state not have a program like this? Why do parents who receive a diagnosis, either prenatally or at birth, still have to struggle with feeling alone and helpless and uninformed?

[W]e want to make sure that every expectant parent receives vital information and support following a test result suggesting a positive diagnosis. We are thrilled to announce that we have funding toward providing 2,000 copies of the Kennedy Foundation’s Understanding a Down Syndrome Diagnosis book at lettercase.org to each of the major testing companies currently offering the new non-invasive prenatal screening tests. This is the only book to be recommended in the American College of Medical Genetics and Genomics Non-Invasive Prenatal Screening Practice Guidelines — and it is the only resource to have been prepared with input by representatives of the national medical and Down syndrome organizations.

We have already distributed 4,000 books in the past month for this campaign, bringing us one step closer to making sure expectant parents are #neveralone following a prenatal diagnosis of Down syndrome. This is wonderful progress, and we appreciate the participation of testing laboratories that have provided this resource recommended by professional guidelines. However, there is much that still needs to be done to make sure all expectant parents get the information and support they need.

Pro-lifers often talk a lot about how awful the high abortion rate of babies with Down syndrome is. And while it’s good that attention is brought to it, what are you doing to change it? If you agree that this needs to change, visit this link and sign the petition to show your support. A message needs to be sent to the medical establishment that parents deserve accurate information when they receive a diagnosis, that they are not and should not be alone, and that Down syndrome does not equal defective.

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8 Comments
  • Donna says:

    Thank you for sharing this message, Cassy. It needs to go viral!

  • Donna says:

    Ironically, my niece (age 16) just posted this video on her Facebook page. God’s gifts are amazing! https://www.facebook.com/photo.php?v=565674916804570&fref=nf

    • mum22 says:

      Donna….

      That needed a tissue alert! Yes….God Is Great! I’ll bet this little guy is going to do some wonderful things in his life. 🙂

  • mum22 says:

    Yes! This needs to change! We had a to sit through all the horror stories before we could even see our son in the NICU. A time to welcome and rejoice in the birth of our son was over-shadowed by the myths and negative information we were given about his diagnosis.
    I have heard from other parents also that they received the same treatment from the Medical establishment….. we aren’t the only ones! Many do!

    I’ve re-blogged your article here: http://www.teamnetworks.net/blog/2525/parents-of-children-with-down-syndrome-should-know/

    We also have a website for parents to visit for information….
    http://www.einsteinchallengedsociety.org

  • Chris says:

    I will always stand by you!

  • Mark Leach says:

    Cassy–thank you for the shout out and for supporting the #neveralone campaign. I’m so glad to hear how well your MFM delivered the diagnosis and supported you. I hope you will share that on the campaign’s site, even if it’s just a link to this post, if you haven’t already. We want all stories, the good and the bad. I’m glad yours was about as good as it can go.–Mark

  • VAlman says:

    As I read your article and viewed the vid (which was truncated by about 30 secs or so), this kept running through my mind:

    1 If I speak in the tongues of mortals and of angels, but do not have love, I am a noisy gong or a clanging cymbal. 2 And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but do not have love, I am nothing. 3 If I give away all my possessions, and if I hand over my body so that I may boast, but do not have love, I gain nothing.

    4 Love is patient; love is kind; love is not envious or boastful or arrogant 5 or rude. It does not insist on its own way; it is not irritable or resentful; 6 it does not rejoice in wrongdoing, but rejoices in the truth. 7 It bears all things, believes all things, hopes all things, endures all things.

    8 Love never ends. But as for prophecies, they will come to an end; as for tongues, they will cease; as for knowledge, it will come to an end. 9 For we know only in part, and we prophesy only in part; 10 but when the complete comes, the partial will come to an end. 11 When I was a child, I spoke like a child, I thought like a child, I reasoned like a child; when I became an adult, I put an end to childish ways. 12 For now we see in a mirror, dimly, but then we will see face to face. Now I know only in part; then I will know fully, even as I have been fully known. 13 And now faith, hope, and love abide, these three; and the greatest of these is love. [The First Letter of Paul to the Corinthians, Chapter 13].

  • […] Fiano shares her diagnosis story and so does David Perry. Both support the #neveralone campaign. If you have written your own post, […]

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