Dark, Update

November 27, 2007

It was – it is – a positive screen for Down’s Syndrome. It’s a risk-assessment screen, not a diagnostic screen, so it’s not conclusive – and I know that I need to focus on the fact that it’s just about odds, that false positives happen all the time, that further testing isn’t as scary as it seems, that it could all be fine – but still, it’s not a happy thing. Not a happy thing at all. It’s a dark cloud hanging over my head now, and even though I know that dark clouds don’t always end up dumping buckets of rain or hurling thunderbolts upon your head, I still don’t like them. They block the sun. I need the sun. So badly right now, I need the sun.

I need to crawl under the blankets for a while to process this. Thank you all so much – from the bottom of my heart so much – for the endless waves of love and support.

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    { 143 comments }

    Jenifer November 27, 2007 at 3:39 pm

    Sending sunshine your way…I have heard of many false positives…praying Sprout is fine.

    Christine November 27, 2007 at 3:42 pm

    {{hugs}}

    remember the sun is just hiding behind that cloud. it is always there.

    Jozet at Halushki November 27, 2007 at 3:53 pm

    I know that nothing is going to help right now.

    Being a mama is hard.

    Sending you hugs and big, soothing peace vibes for your troubled mind and heart.

    (But really, it will all be okay. You have 1,000 shoulders to lean on out here in blogland.)

    Kendra November 27, 2007 at 3:53 pm

    I have no wisdom or similar experience to offer, but you and your family are in my prayers. The sun will come out again.

    verybadcat November 27, 2007 at 3:57 pm

    Saying a little prayer for you and your Sprout.

    Dana J. Tuszke November 27, 2007 at 4:03 pm

    My thoughts and prayers are with you. I can’t begin to understand how you feel, I just hope that there is some light at the end of this dark tunnel.

    As difficult as it is, be well. I heart you, Catherine. We are all here for you.

    -hugs-
    Dana

    mothergoosemouse November 27, 2007 at 4:12 pm

    Been there, at 20 weeks, with a troubling ultrasound marker for Down’s, which drove an amnio recommendation. The result? Tacy.

    Hoping for a similarly reassuring and happy ending for you too.

    FishyGirl November 27, 2007 at 4:13 pm

    Oh, honey. I remember that time, with Sunny, and how scared I was. I cried and cried and cried. Then, I just stopped, and had some sort of peace, because I knew what I wanted to do with the information I had. We were firm that we didn’t want to do amnio, because for us we would not have chosen to terminate for that reason, so we did about a dozen level II ultrasounds instead. My ultrasound during the nuchal translucency test was fine, it was just the bloodwork that increased our odds. Frankly, I now think that the damned bloodwork is probably influenced by what you eat or solar flares or something, but our daughter is genetically normal. I haven’t forgotten the fear, though.

    I wish you strength while you decide on a path of action, and peace with your decision. Feel free to email me if you want further information on our experience – I’ll tell you anything you want to know.

    Stacie November 27, 2007 at 4:34 pm

    first time reading your blog, I just have to comment.

    Please, please try not to worry. As you said, many are false positives…and a more intense ultrasound could prove that you worried for not.

    HUGS, hang in there and try (I know hard to do) relax.

    Anna November 27, 2007 at 4:41 pm

    For what it’s worth, the false positive rate for this sort of screening test is really high…

    So much peace and strength to you.

    slackermommy November 27, 2007 at 4:45 pm

    The worrying is the worst. I had a some scares with a couple of my pregnancies and the not knowing was always the hardest part because your thoughts are in such limbo. At least once you know you can direct your thoughts to either being thankful for a false alarm or preparing yourself for a child with a disability. Just as many of your commenters have posted odds are good that this is a false positive and I’ve got my fingers crossed that the sun will be shining for you soon.

    Emily R November 27, 2007 at 4:59 pm

    Oh. That must be so difficult to wait through.

    If we had any sun here in London, I’d send it to you.

    jennifergg November 27, 2007 at 5:17 pm

    I wish I could send you some sunshine…but it’s cloudy here, too, dreary and gray, and I’m not even pregnant and I don’t have worries about my baby on my mind.

    What I do have is a child with Down syndrome, and two other children also. I write about our family at my blog Pinwheels (http://jennifergrafgroneberg.wordpress.com) and if you like, check it out. I hope it will help put your mind at ease, until you learn more.

    (Also, for what it’s worth, I’m in the camp that thinks these screens are ridiculously inaccurate…)

    Jennifer aka Binky Bitch November 27, 2007 at 5:26 pm

    There is plenty of sunshine here in Lower Alabama, I’ll send it your way.

    Thinking of you.

    Assertagirl November 27, 2007 at 5:27 pm

    I wish I had the words to tell you how much I am thinking about you right now…I’ve been wondering all day how your appointment went. It sounds like a LOT of other women have been through this, and you’ve got a lot of support here. Many virtual hugs coming your way.

    Karen (miscmum) November 27, 2007 at 5:31 pm

    Sending you lots and lots of hugs xx

    Anonymous November 27, 2007 at 5:31 pm

    sorry but can someone please tell me what a level 2 ultrasound is.is it like bio-physical profile of baby?my youngest was extremely high risk and i had to have bio physical ultrasounds done every 2 weeks.so is it the same thing?thanks LAVANDULA

    Someone Being Me November 27, 2007 at 6:04 pm

    I am so sorry to hear that. I refused to take that test after 2 people I knew got false positives on it. I do remember when they sent me to a specialist 2 hours away for a more detailed sonogram because of some concerns with my original sonogram. I cried for days waiting for that sonogram. It all turned out fine. I pray this will be the same for you.

    Momish November 27, 2007 at 6:05 pm

    My thoughts are with you and sending you any sunshine I can find.

    Qadoshyah November 27, 2007 at 6:15 pm

    I have a wonderful 2 1/2 year old brother with Down syndrome. Having a child with Down syndrome is not that bad of a thing. My brother brings so much joy and love to our family, we wouldn’t change him for anything!!

    No, we didn’t know prenatally that my brother would be born with Down syndrome, but it wouldn’t have made a difference. He’s still a person, he just has a little extra.

    If your baby does have Down syndrome, there is hope and a whole wonderful world out there! There is alot people with Down syndrome can do, despite the dark, uninformed diagnosis that most doctors give.

    Feel free to email me at qf@gotdownsyndrome.net or my mom at kim@gotdownsyndrome.net

    ~ Qadoshyah
    19 yr. old sister to a wonderful boy with Down syndrome!
    http://gotdownsyndrome.blogspot.com

    Veronica November 27, 2007 at 6:30 pm

    (((hugs)))

    That is all I can offer you. I truly hope that it ends up being nothing, but thaat doesn’t help you at the moment.

    I will be thinking of you.

    Suburban Oblivion November 27, 2007 at 6:31 pm

    So this was a case of failing the Tripe/Quad Screen? I wish you had mentioned that before. Many, many mothers are opting not to have that test done for the sole reason that false positives are SO common. We had probably 4 or 5 failures of that test in our August 2003 baby group, and every last one of them turned out to be a false positive. I still think people should have it done, but just know it is a very, very unreliable test.

    flutter November 27, 2007 at 6:35 pm

    There is love, and there is support no matter what the outcome. Get some rest.

    wordgirl November 27, 2007 at 6:46 pm

    Here’s hoping the sun comes out for you soon…both literally and figuratively. Big, warm hugs to you.

    Awesome Mom November 27, 2007 at 6:51 pm

    Hang in there and try not to stress too much (if that is possible). It is hard facing the possibility of a child with birth defects (I know having been there and made it through before).

    David November 27, 2007 at 6:53 pm

    Wow Catherine – I’m thinking about you and yours and hope everything works out for the best.

    motherbumper November 27, 2007 at 6:57 pm

    We are sending love and support – lots of it, as much as you need.

    jen November 27, 2007 at 7:00 pm

    Bad,

    I tested positive for DS – odds were 1 in 10 in fact. And everything is fine, all was negative at birth.

    email me always if you want to talk more about this.

    Sandra November 27, 2007 at 7:01 pm

    It will be okay. It will.

    Sending all my love to you.

    If you need ANYTHING at all … you know where I am.

    Heather November 27, 2007 at 7:07 pm

    Oh crap! Sending you much love. These screening tests really can play havoc… and keep in mind that’s all they are from anything definite.

    I also have to say that having spent lots of time with people with DS, even if it is DS people with DS can be a joy to know. (in no way implying you think otherwise, just saying it can be a joy)

    It’ll all work out for the better I’m sure. You’re in my thoughts.

    Bri November 27, 2007 at 7:37 pm

    I can’t even imagine what you’re going through, but I’m so sorry that you have to go through it at all. Sending you positive thoughts….

    One Cool Chic November 27, 2007 at 7:40 pm

    It will be ok. It always is. Think about the ten little toes and the ten little fingers that you will touch with your hands. Hang in there.

    Lyns

    anniemom November 27, 2007 at 7:59 pm

    Oh man, I don’t know how to “get right” with test results and waiting… I can only imagine that this is painful news, regardless of the outcome. With my son, I did some visualization which helped. I just tried to see his little face, kiss his little smile, tickle his wee toes. I think it really reaches in there and does some good, for both of you. You and Wonderbaby and HBF are a great team, and you have a sweet little Sprout in there, lovin you bigtime. All kinds of big love coming to you from nashville. xoxo.

    Andrea November 27, 2007 at 8:11 pm

    I have been where you are and it is no good place to be. Thinking of you, and hoping with fervent hope that they’re wrong, that the odds are in Sprout’s favor, and that this is merely a bump in the road.

    Femme November 27, 2007 at 8:35 pm

    There is nothing I can say to take this away, but from the most sincere part of my being: I wish you strength and good things. I wish you peace and great further test results. I wish you sleep at night. I hope with all my heart that Sprout is just fine. xx

    Gidge November 27, 2007 at 9:29 pm

    My OBGYN with my first pregnancy was also a TEACHER of obstetrics, and he HATED those tests…..he said he’d dealt with more false positives than anything else and that it created a lot of unnecessary fear and heartache.
    I’m assuming you had the initial blood screen, and not an AMNIO…..which is what I’m referring to.
    Unfortunately/fortunately amniocentisis tends to be correct but the initial blood screening they do and ultrasounds both give off a lot of false positives.
    So take a deep breath and think good thoughts.

    Nothing is known until it’s known.

    Queen of Spain November 27, 2007 at 9:38 pm

    We’re all here.

    Diane November 27, 2007 at 9:54 pm

    I don’t know how to comment on this process of waiting, because back in the day, they didn’t run all these tests and you might not know until you delivered.

    My youngest has a developmental disability similar to Downs. She’s now 17 and a very unique and loving individual. I am a better mother and human because of her. I also left the corporate world to work for an agency that does disability services because it was the right thing for me to do… to know how to help her.

    I know it’s not an easy process when the diagnoses and discussions begin… “Is there or is there not something wrong with my child?”

    I won’t say something trite like “you’ll be okay”, but should the tests be accurate, you can and will develop the tools to help your child succeed, and you’ll become a wonderful advocate for your child.

    I’ll be sending you all of my best thoughts as you work through this process.

    ali November 27, 2007 at 10:03 pm

    love and hugs, my friend. love and hugs.

    Jezer November 27, 2007 at 10:18 pm

    Keep breathing. I’ll keep on sending the love and hugs and prayers for you.

    SUEB0B November 27, 2007 at 10:42 pm

    Hugs to you. I know you will be ok, no matter what happens you’ll do fine.

    Mamalooper November 27, 2007 at 10:46 pm

    Breathe and focus on the next step. Don’t get ahead of yourself.

    Sending lots of hugs.

    Heather November 27, 2007 at 11:02 pm

    It is hard to process news like this. You’ve heard it all before about the false positives…one of my husband’s relatives had that and her daughter does not have Down’s.

    I hope for this outcome for you as well.

    Magpie November 27, 2007 at 11:04 pm

    i hope the sun comes soon, and that you beat the odds.

    LisaDuvall November 27, 2007 at 11:11 pm

    I’m a lurker on your blog and I just want to say that you are in my thoughts and prayers. I’ll be thinking of you, Sprout, and your family.

    Laura November 27, 2007 at 11:34 pm

    I am saying a prayer for you and your family. From the looks of these coments you have a lot of support – here’s adding my little bit to the pile.

    iheartchocolate November 27, 2007 at 11:42 pm

    Try to remember, even when clouds are present, the sun is always there. No matter what the outcome, you are going to make it. You are going to love that baby no matter what the tests tell you. We are going to love little sprout too! I hate that you are suffering in that place of “not knowing”, that part will be over soon.

    Amy November 28, 2007 at 12:04 am

    My thoughts are also with you.

    I admit – I do not know what you’re going through. I was blessed with uneventful pregnancies (except for all the puking).

    But I do know what it is like to wait for a diagnosis. To wait to hear whether this child – that you love so much – might struggle with things others take for granted.

    My son does have special needs and that diagnosis was very difficult to process at first. But now it’s just a part of our lives. I don’t know that I would change it even if I could – because there is something magical in the way Gabe sees the world.

    I am still praying and hoping that Sprout is absolutely fine. But I wanted to let you know that even “worst case scenario” might not be so bad.

    Niksmom November 28, 2007 at 12:12 am

    Catherine, I will say a prayer for you and little Sprout that it is all a “misunderstanding” between the test and the doctor. Ok, trying to put a light-hearted spin on it a bit. I have a child with multiple disabilities and while I love him with all my heart and would do anything to help him, I wouldn’t willingly wish it on another mom.

    That said, let your fear fuel you to learn more by reading Jennifer GG’s blog (among many other wonderful ones out there) and finding out more from other moms. If you know there is the slightest chance, prepare yourself with knowledge.

    I will hold a vision for you of a beautiful, healthy Sprout.

    Pgoodness November 28, 2007 at 12:26 am

    Thinking of you.

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