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December 2012 Moms
jelly0822
member
D/S Risk Factor :(
jelly0822
member
So I went to see my doctor today for my monthly appointment. We were talking about things and everything seemed to go pretty well. She ordered another ultrasound only because she didn't get enough info from the one last week. (But we were expecting this because the techs told us that might happen.)
So I left, thinking everything was ok. Then my doctor called me and told me to come back because she got the results from the second sequential screen I did. My risk for d/s for my age should be somewhere around 1 in 470, but the bloodwork shows it at 1 in 235. 
Then she set me up with a referral to see a Maternal and Fetal Medicine specialist for a consult for amnio.
I'm worried beyond worried, but the doctor told me that the only times she's seen d/s were when the risk levels were at 1 in 10 or less. She also said that they may be able to see something in the ultrasound she's sending me for, and we may not need an amnio. But I can't help but worry. All this crap is spinning around in my head.
When I left the first time I was excited because we had discussed doulas and birthing classes and how our next couple of appointments were going to go. Now I'm just not into anything. After I told my mom, she asked about the baby shower, and I told her I don't even care if I have one now because of the worry and fears I'm having. I just needed to vent, I guess.
I've been holding off crying for a while today, mostly because DH is at work and wasn't able to go to the appointment today. I think I'm nearing the time to cry. :'(
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Re: D/S Risk Factor :(
I'm sure this must be shocking news for you and I'm very sorry that you are so upset. I will say, though, that my cousin's son has Down's. She did not opt for any testing prior to his birth, so she was quite surprised when he was born. I do not think your child will have Down's (the odds are still very much in favor of him not). However, if he does, he can still carry on a very normal life with certain adjustments. My cousin is very happy and her son is very happy. We all just spent a week down at Disney and had a fabulous time! I will also add that even if you have one child with DS, it doesn't mean all of your children will have DS. Her 2nd son does not have DS.
I hope that you can try to relax and think about your sweet little boy. I'm sure that any extra testing will just show that he is fine. GL!
I really hope you get over these feelings of not caring anymore. Even the Dr. tried to reassure you.
Down's Syndrome is not the end of the world.
A friend had to be checked to see if she was leaking amniotic fluid last year & since they were already going in, she had the amnio done (even though she hadn't intended to do so), she says the build up in the mind is far worse than the actual procedure which was over in a matter of minutes & she didn't really feel it other than some pressure.
Give your DH a hug when he gets home.
I can imagine it's very hard when it's your own baby you're worried about and your risk goes up AT ALL...but try to remember that 1/235 means your chances of baby not having DS are still at 99.57%. And they were previously at 99.79%. Odds are still really, really high that baby doesn't have DS. It'll be okay!
I know you're totally right. I've taken special ed classes and know what to expect as far as development and such. But I also know the health issues that can come along with it, and that's what really scares me, the possible raised risk of heart problems, etc. Thanks for your support.
Oh, and just to clarify, I didn't say I didn't care anymore, just that I'm not into anything really anymore. I was excited about the shower, and now my mind is on the baby and the waiting game. And we were looking forward to getting another ultrasound, but if it's just to find out the sex, then that's not important anymore. I'm also very worried about amnio because I had a hard time in the first tri, so I'm very afraid of mc.
SandT (if I can remember your name), that's a great point. If I look at 1/235, it's .004 something chance. That's still little, but I'm still worried. Thanks for giving me a little perspective.
And I'll try to remember the other test whenever I get in to see the specialist.
I am so sorry you are going through this. While I believe that you are still in good numbers, I want to suggest some reading. Kelle Hampton has a blog and is brutally honest about the reality of having a child born with DS and take you through her journey of how this isn't a jail sentence but a blessing in disguise. Her book Bloom is out too. Again, not that I think you need it, but after reading her blog and book and going through my own pg journey I am more accepting of a DS diagnosis than I was before if I was ever given one.
www.kellehampton.com
'I loved you for a thousand years and I will love you for a thousand more'
Our odds were 1:86 or something, and I will admit, I spent some time going through the same worries and formulating a plan b for the rest of our lives. We also met with a genetics counselor and she really helped us, and on the bright side, we got a couple of really in-depth ultrasounds out of the specialist visits
.
They reduced our risk after they decided that our first due date was not accurate, so keep in mind that there are a lot of different factors that effect the risk rating. After we had a second detailed ultrasound where no markers were found, the risk was reduced even further, so we decided not to go with amnio. I barely even think about it anymore. I know how you are feeling, but just try to remember that no matter what, things will be ok. I think even if you do have a child with DS, getting your family involved and finding your place, and your baby's place, in a larger community can be really comforting, so don't discount things like showers and parties yet!
She didn't say she didn't care, nor did she say d/s is the end of the world. If I were in her shoes I'm sure I would be in somewhat of a funk after hearing that news too. So many unknowns, so many worries and thoughts and questions. I imagine it's an extraordinarily overwhelming thing to hear, that your baby may have downs, that you may have to go for amnio, etc, and right now a baby shower seems insignificant in comparison.
You hit the nail on the head. It's like I went in to the appointment thinking one thing and came out worried about something else. Your story is reassuring to me. Someone else on here gave me the odds in my favor yesterday, and they helped a little. You know how it is, thinking of all these perfect things for your baby, and then get so frustrated when anything gets in the way of that. I am also very scared of an amnio, but I'm hoping that if I need one, that it'll be just fine, like you said.
You know, you should write my posts for me, because I wanted to say exactly that, but couldn't find the words when I was so worried yesterday. Yes, I care, but not about something that isn't important in the grand scheme of things. I told my mom this, and she has a hard time understanding because she is so excited to throw the shower. I know that, but neither of us can truly know the feelings the other is going through. So I told her to just find things she likes and go with it, the way I'm feeling right now, because I want to focus on the baby and get these appointments scheduled.
Thanks for understanding me!
Don't worry - you are NOT alone in this! Last week my O/B called me to come into her office and told me that my Downs risk was 1:38. For my age it should be 1:1000. So of course with news like that, I totally bawled my eyes out the entire day. I have an amnio scheduled for Thursday. I've been trying to focus on the positive and trying not to worry - I figure once we have conclusive results we can worry then. It's really tough - and I FEEL YOUR PAIN - totally!
If you ever want to vent again - feel free to PM me.
I didn't come back to this right away because it did make me kind of mad, and let me tell you why after saying that I see she clarified herself as well, and maybe I over reacted but there is a reason for that.
There have been reports on the news about couples suing the hospital because the baby had Down's Syndrome and the test didn't "catch" it. The couple states that they would have aborted the child had they known. This happened before I got pregnant, I was upset because I had spent years trying for a child never to be given one and these people couldn't see the miracle they had. It was upsetting. Fast forward to Surprise! I do finally get pregnant, and I am 36 years old... I will be tested, just to know. this story comes up again, and I have a "friend" try to convince me to abort if the test comes back positive. By the way she is no longer a friend. So when I saw this post it made all that crap come rushing back to me and it irritated me... I honestly thought I maintained myself pretty well.. I almost flew off the handle, but knew that wasn't right. I get being scared... I do... I am human... I just had a moment... please forgive me.
You're forgiven. At first, I didn't understand why you thought I said I didn't care. I totally understand being offended if someone can't be grateful for a baby, regardless of any developmental disabilities it may or may not have. And thank you for clarifying, and giving me the chance to clarify.
Still, right now, I'm not even near thinking about a baby shower as much as I was even yesterday before my appointment.