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A bit down on Down Syndrome

October 1, 2009

Two days ago we went to the hospital to have an extra ultrasound. When the doctor ordered tests that were run on Queenie at 16 weeks, at only 11 weeks I knew something was wrong. When Principe said he heard the doc whisper to the nurse something about the baby being small but then told us that everything was fine, I knew something wasn’t right. But I don’t want to be one of those overly dramatic, nervous mothers. I have always prided myself on NOT being that way, and even though motherhood changes you a bit and I find myself gasping loudly as Queenie dangles herself precariously from the monkey bars, I still think of myself as a calm and collected mother who is optomistic and won’t dwell on the little whispered comments a doc makes to her nurse when she tells us everything is fine.

And everything was fine. Or so I thought. Five days after the first appointment I went in for an ultrasound with a specialist. She said everything was fine. Heart good, movement good, baby right on track. I asked about the size and she said the baby was right at 12 weeks, 0 days. So, I figure, my OB is a bit out of practice on the ol’ ultrasound machine, no big deal. As long as she knows how to deliver I won’t hold it against her.

Then we get a call from the hospital. The blood results are back and they want us to come in for another ultrasound. WHAT??? Remember, we are talking about a public health care system here. There are only supposed to be 3 ultrasounds during the entire pregnancy. Unless something is wrong. But the lady on the phone said everything was fine, that they just like to do another ultrasound when we get the blood results back. Of course there is no reason to think this nice appointment lady is lying, but I know something is going on. I never said anything to Principe, because, well, again I don’t want to sound like a neurotic mother always thinking it is bad news. But I had the gut feeling. You know the one. Just that dark cloud in the back of your head telling you that all the events just aren’t adding up.

So we get to the hospital and go into the office. The doctor seemed tired already, and it was only 9am. She told us to sit down in a quiet, heavy tone and proceeded to drone on about how the blood results came back showing that this pregnancy is at a high risk for Down Syndrome. She explained that we are going to do an ultrasound today, but that the next step, if we want more confirmation, would be to do an Amniocentesis. I didn’t understand the word in Spanish and asked for clarification. She sighed. Heavily. And started her droning again, at the beginning. Principe interrupted her and explained that it wasn’t that I didn’t understand what she had said, it was just that we didn’t understand the last word. Neither of us. She sighed again. Heavily. And started from the beginning. So we let her. And I thought….wow, you have a long day ahead of you, lady.

When we finally stopped interrupting her, she explained that an amniocentesis is a test where they take a sample of the amniotic fluid and test it for the odds of Down Syndrome. I immediately said that I didn’t want to do that. She smile wearily and shook her head. And explained it again. I said no and turned to Principe to say that there is a 1% chance of miscarriage with that test and he immediately reaffirmed my no. The doctor again smiled wearily. She told us that no one was forcing us to do anything. We told her we understood that. She said we should think it over. We said we didn’t have to. Fine. Let’s do the ultrasound. Yes, lets.

The ultrasound was good. Queenie behaved herself, although at the end the doctor told us not to bring her next time, that children aren’t really allowed in. (We saw another child go in with her mom right before us. !) She also hushed me when I tried to tell Principe something as though looking at an ultrasound is like listening to a patients lungs. Errr.

When we were done she told us to think about the amniocentesis again, that some couples choose to do it in order to then decide to interrupt the pregnancy (what a non-invasive way of saying “kill off their child who isn’t perfect”) and, with her tone turning into that of a professor’s she ended with, “And that is their personal choice.” Then the nurse told us to wait outside.

Huh. No kidding. Personal choice. And it is ours to not take the test because no matter what the result is we aren’t going to interrupt the pregnancy. Which we obviously made clear to her when we immediately said no to the procedure and didn’t really care to hear any more. I think that annoyed her. But what the hell do I care if she was annoyed and what the hell does she care if we are that kind of couple that doesn’t believe in abortion for any reason? Yes, I looked her straight in the eyes and immediately said no. My attitude was such that I didn’t need to hear more. So was Principe’s. And she understood that.

We have a 1 in 233 chance of having a baby with Down Syndrome. Apparently that is high. Doesn’t seem so high to me, but medically speaking, it is high. We decided we weren’t going to tell any friends and few family members. I told my mother, but I won’t be telling my brothers or sister. I won’t be telling my best friend. I honestly wish Principe wouldn’t tell his family, but if he does we have a pact that we will make it clear to them that this is the last conversation about it. No more. The last thing we want is for everyone to start thinking and saying, “Poor baby” and talking about it like it is a sure thing. I believe in the power of words. I believe in the physical and psycological effects that can have both on parents and unborn child.

But, two days later, after leaving the hospital with a light feeling and thanking the Lord above that my husband shares my morals, I decided I had to tell someone. I had to get it off my chest. I’m not really worried.  Why worry? Whatever the truth is, it already IS. Nothing will change that. But I am praying for a healthy baby. Not to not have a Down Syndrome, as I find that selfish and prayer isn’t supposed to show your utmost selfish side. Whether perfect in the eyes of society or not, my baby will be perfect in my own. No matter what. So I pray for health. And to not worry or concentrate on “the news”. But I had to tell someone. And you are that someone.

Thanks for listening.

11 Comments leave one →
  1. October 1, 2009 5:22 pm

    We had a similar situation. They wanted us to check because we were in our 30’s but we felt there was no reason to check since we’d keep the baby no matter what. With the non-invasive tests they could nothing was abnormal and we promptly forgot about it. On the day of my daughter’s birth we found out she had DS. At them time it was shocking and scary, and the hospital didn’t help with all of it’s outdated and misinformation about Down Syndrome. Next month our daughter, Braska, will be 3 years old and she’s the coolest thing ever. She’s so freakin’ fun. If there was a way to take away her extra chromosome and make her ‘normal’ you couldn’t pay us to do it.
    Good luck to you. Whether you get a regular kid or a kid with DS, I hope you enjoy him or her. If you ever have any questions please feel free to email me.

    Here is my daughter’s website.

  2. wideopenworld permalink*
    October 1, 2009 8:03 pm

    Thanks for the encouragement! We know we will love him/her no matter what, I guess it is dwelling on the “ifs” that I just don’t want to do. I guess it is scary when the doctor says that your child is going to be different from everyone else. Possibly. Maybe. We are going to try and move past it and wait for the confirming moment….whenever that is! Every parent of a DS child says the same thing, that they are best gift ever. In the end, they can test for DS but they can’t test for a multitude of other “problems” that a child might have, so we are just deciding to go ahead and treat our baby “normal” and would like everyone else to also. We will see in April what our bundle of joy has in store for us!
    Thanks for sending your blog. I love it!

  3. October 1, 2009 8:48 pm

    I guess I’ll have to check back in 6 months then. 🙂

    • wideopenworld permalink*
      October 6, 2009 12:59 pm

      Yep, although someone told me that there is another indication when they can start measuring the femur. I think, like many other tests, that it isn’t 100%, but it is an indication. Oh, well. We are moving forward now. Most of the family knows, questions are out of the way and we are deciding to just be at peace with whoever our baby is. The only way to be, right?
      BTW, your two little girls are the cutest!

  4. christiane permalink
    October 1, 2009 9:25 pm

    Hi, I stumbled upon your entry and just wanted to tell you that my thoughts and prayers are with you and your family. Your post was very touching, it sounds like you are a very strong woman with an amazing attitude. Best of luck with your baby.

  5. October 6, 2009 1:33 pm

    When Braska was born we were totally devastated. We thought she was essentially going to be a vegetable and a burden. Turns out she’s the greatest thing ever (don’t tell my other daughter). And since you think they are the cutest I’m going to claim those all as my genes.

    • wideopenworld permalink*
      October 6, 2009 1:38 pm

      Hee, hee! Wish I could claim the same for my little Queenie, but she looks exactly like her daddy…just much prettier!
      I guess them being a burden is really most people’s worry. Can’t say that we aren’t worried at all, but we are praying for the baby’s health and for knowledge on how to handle whatever comes. Besides, you and other people who have gone into the blogging world to help those like us who are interested in seeing what life is like with a child with DS, just to get some knowledge and background. If it comes to it, we know that we aren’t alone, and I think that is the most comforting thing in the world to me right now!

  6. October 6, 2009 2:49 pm

    If you have a kid with DS, I’ll trade you straight across for my regular one.

  7. October 6, 2009 2:54 pm

    And as far as blogging goes we ALL have a blog:

    Dad (that’s me) –
    Nebraska (this is the one I posted earlier) –

    I didn’t really mean to post this but I don’t see a link to just send you an email.

    • October 6, 2009 8:43 pm

      So funny! I just saw your blog with her sad face. What a character!
      Can I admit that I was surprised to hear that you are the dad? Guess I am sexist in thinking that this blog thing is by and for women! 🙂 ! that probably comes from my own husband not being into it!
      And the email thing…I have no idea how to do that. But it is an interesting idea to look into….

  8. October 6, 2009 9:03 pm

    Well, Mom, maintains the girls’ blogs. I just do my own and as you can see it’s very light on substance.

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