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Anatomy Scan - Down Syndrome likely - Page 2

post #21 of 61

Thanks for that  birth story link. No fair making a pregnant woman cry, what a beautiful, REAL story.

post #22 of 61

Same here! I was really crying and the kids were staring at me... what an amazing birth story.

 

Quote:
Originally Posted by Onemoreontheway View Post

Thanks for that  birth story link. No fair making a pregnant woman cry, what a beautiful, REAL story.



 

post #23 of 61
Meredith, I'm so sorry you're going through this. However things work out in the end (and onething is for sure, the final chapter isn't written yet on this baby boy of yours), it's a painful and difficult thing for you to face.
I want to reiterate what one of the first posters here said - people who have downs are amazing! I know that we all expect healthy, "normal" babies and having those expectations rocked by even the possibility of something other than that is frightening...but, I know families who have children with downs and despite the obvious challenges and trials, they will tell you how much joy and light they bring to their family. If kelle Hampton (the birth story linked to above, I read it last year and bawled my eyes out) has done one good thing, it's that she has documented for people, in words and very pretty pictures, the possibilities of joy with a downs baby. In a culture where an overwhelming number of babies with downs markers (which are not rarely false positives!) are aborted before they're even given a chance at life, I think what she's doing is huge for that reason alone.

I know we've got a lot of variety in faiths here but please keep relying on God to sustain you through this. You and your husband already know this baby is not a mistake or an abnormality! It's your baby! Things may or may not end up how you envisioned them for a third child, but this is still your baby and a perfect, living embodiment of the love in your family.

I'll be praying you guys find wisdom and peace regarding which further tests to do.
I hope you can reclaim your pregnancy zen and find that it can transcend even the "bad" news.
And another thing, in reading this thread, I am so overwhelmed by how awesome ALL of you moms are. Seriously, each response left me more weepy. So much kindness and love here!
post #24 of 61


 

Quote:
Originally Posted by lightheartedmom View Post

And another thing, in reading this thread, I am so overwhelmed by how awesome ALL of you moms are. Seriously, each response left me more weepy. So much kindness and love here!


I don't post a lot, but this sums up how I feel about this group and it is comforting to know that if I have questions/problems or joys to share that the response here would be wonderful.

 

Meredith - your family is in my prayers.

 

post #25 of 61
Thread Starter 
Thank you all so much for your responses. It has been such a difficult couple of days and reading your posts has really helped. I can't believe we did the anatomy scan on a Friday! I can't wait until Monday morning when I can call the doctor with my huge list of questions that I've compiled over the weekend.

We are having dinner with our family tonight (in laws, cousins - a big family dinner) and my husband doesn't want to tell them anything. I feel like I'm going to burst out crying at the table and tell everyone we have a down syndrome baby and that I can't stand being around so many cute and perfectly normal kids at dinner! I'm really just an emotional wreck right now. My neighbor just had a perfectly healthy baby and she is much older than me. I should probably bring her a meal and congratulate her and ooh and ahh over her perfect newborn but I just can't. I guess I'm going through an angry/jealous phase today.

Hubby seems so much less concerned. Perhaps he is just in denial or something but he just isn't as worried as I am. He is trying to make me feel better with little jokes and comforting hugs. My cat that I'm so nuts about is a Scottish Fold. About 50% of Scottish Fold cats have flattened, bent ears due to a genetic defect that gives them weak cartilage. I had to get on a waiting list to adopt him from a breeder because they are rare here and in high demand. Anyway, I was crying about how I didn't want a baby with defects and how could I love this baby as much as I love my other kids? Hubby just pointed to my cat and said "that is a defect, and you love it. You'll love our baby. I'm not worried". Hubby just has a different way of dealing with things I guess.

I read Nella's birth story and cried my eyes out. So beautiful. So honest. I'll be reading through the rest of the blog this afternoon. I just love it.

I'm so grateful that I have you ladies to "listen" to me. Thank you for being so accepting of my crazy emotions as I go through this. I've been thinking that I'm a bad mamma for having some of the thoughts I've been having. Your support (and Kelle Hamptons blog) have really made me feel better this morning. <3 love you ladies!
post #26 of 61

Hi Meredith, just sending hugs and support hug2.gif

 

I'm right there with you. We also had our anatomy scan on Friday and had two soft markers. I'm not as worried, because my NT scan and quad screen (which I decided to have since I'm 40 and also had previous losses) put me at 1/400 for Downs, and there were no markers at that point. The thing that worries me most is that there is fluid on her kidneys, which can build up and cause damage. They are doing another ultrasound at 24 weeks to keep an eye on things.

 

My MFM told me that soft markers are not at all diagnostic, and he thinks they should be treated differently than they are. So keep in mind that there is a still a very good chance that your baby is fine.

 

Hang in there!

post #27 of 61

Well I forget how many markers DD had but they told me there was basically a 1 in 200 chance she would have down syndrome...she came out fine. You couls still have a HB if you want and if he does have it take him to the hospital afterward to check for heart issues etc.

 

grouphug.gif I know how this feels I freaked out my whole pregnancy and I am sorry you are going through this.

post #28 of 61
post #29 of 61
Thread Starter 
Thank you Sandy! I am worried about the fluid in kidneys causing damage as well. I am wishing i had done a quad screen!!!! I decided not to because Im 28 & hate needles. I will be 20 weeks on Tuesday and am going to call on. Monday to see if it's too late to do it. I am also having another ultrasound at 24 weeks (Jan 12th).

The thing that got me panicked was they offered to do amnio right then! On Friday! They reviewed the US results and said I had 3 markers plus baby was overall a little small and said we could do amnio to determine if baby has DS right away. Apparently they thought my risk was great enough that the 1/200 chance of baby dying from amnio was reasonable. It scared me and I just told them id need to think about it and I left.

What other marker did u have besides fluid in kidneys?

I'll be thinking about you and praying that your baby & mine are both just fine.
post #30 of 61
Thread Starter 
Sosurreal, the fact that I can still have a HB even if baby has DS is comforting also. I was so worried I'd have to be in the hospital and baby would be taken immediately for testing and observation. I think I'll really need those first precious moments to help me bond, especially since I'm struggling with the idea that baby might not be the "perfect" baby I had imagined. I have read online that DS babies often need medical attention so that was a huge concern. Fortunately my midwives are supportive of my HB no matter what. :-)
post #31 of 61

If it is any consolidation Drs don't see amnio as risky nine times out of ten. It seems to be a very routine thing these days and I believe the stats are a lot better that 1/200 now.

post #32 of 61
I am so sorry Meredith. I wish that I had all the advice in the world to give you, but unfortunately, the most I can do is offer hugs and prayers.

I really hope that you get some definitive answers on this, but I applaud you for doing research to prepare yourself. Another avenue you might want to try is talking to a support group for parents with kids who have Down's. It may help you better understand the challenges and joys of raising a child with such special needs.

If there's anything I can do to help, just let me know.
post #33 of 61

The jealousy/anger/weepy phase is completely normal.  And honestly, if you're not able to deal with the family dinner, I'd bow out.  Claim exhaustion, claim hormones, claim whatever you feel like.  Nobody's going to question you on it.  It is completely normal to be dealing with grief right now, and trying to rush yourself through it isn't going to do anyone any favors. 

 

As for possible heart defects, since they did see a heart issue on the anatomy scan, I would recommend asking about a fetal echocardiogram (heart u/s).  We had to travel a bit to find a pediatric cardiologist (about 90 min, and we're in a big metro area), but it was worth it to get answers.  A regular radiologist is not looking really in depth at any given thing - they just don't have the knowledge to do so.  Regardless of whether or not you choose to do the amnio, having a heart scan done by someone who specializes can give you a lot more info.  Since much of the reason that DS babies have difficulty at birth is heart related, this can set you up to know what to expect.  The scan was something our genetic counselor arranged after the radiologist called her to get her involved in our case.  I do hope you can get the involvement of a genetic counselor (I just bless Kaiser for the way they handled that portion of things), you might have to request it from your OB though. 

post #34 of 61

If the quad screening is the blood test, my doctor said we could change our mind and have it done up until like 22.5 weeks, so you should be good, if that is the test you're talking about (the one that gives you like 1/400 chance or 1/5 chance, or whatever)

post #35 of 61

Meredith - I wish I could begin to understand what you're going through. All this uncertainty is so scary. I also opted out of genetic testing and amnio and I was on the fence about getting an anatomy scan, too (though we decided to do it in the end - this week). You're in my thoughts and hope that you're able to find your pregnancy zen again stillheart.gif

post #36 of 61
Quote:
Originally Posted by MeredithA View Post

Thank you Sandy! I am worried about the fluid in kidneys causing damage as well. I am wishing i had done a quad screen!!!! I decided not to because Im 28 & hate needles.


Meredith - I did the Quad screen on Wednesday last week (@ 18+ weeks) after the whole femur soft marker experience.... I still haven't gotten the results - tomorrow (!) - but honestly (and I'll have a better answer to this tomorrow...) I'm not sure it was such a good idea to have it.  It's a screen. Not a diagnosis. There are apparently a ton of reasons women get false positives...Which really means they are analyzed to be a higher risk - not an actual "positive," as in "yes, downs, no not downs" - which honestly is not really want I need - right now - I need further explanation/answers... SO, if I get a scary result tomorrow, and then go an have an amnio as a result... and then everything is fine... was the Quad screen really worth it? 

 

BUT all that said.... for some reason I thought we had the same due date? May 14? if that's the case, you totally haven't missed the Quad window.  Also - if you're a May 14 edd, aren't you only 19 weeks tomorrow? Wouldn't that be why the babe is measuring smaller?  I'm not sure where I got it into my head your due date is 5/14 though, so forgive me!

 

Hope you get a lot of good advice and answers tomorrow! hug2.gif

post #37 of 61

I'm just curious, after reading all of this, is there a definitive way to diagnose DS before birth? 

 

Meredith, you're still in my thoughts and prayers and I hope you get some answers soon.  Please let me know if there's anything I can do.  hug2.gif

post #38 of 61

BubbleMa - as far as I know, CVS and Amnio are the only two that actually tell you definitively, rather than just giving you more odds.

 

Amnio isn't considered quite as dangerous as it once was, some reports cite the risk as 1/1600 now rather than 1/200. CVS is considerably riskier, and can only be done up to the 13th week.

 

As far as offering it right away, keep in mind that these days doctors often do/offer what they think they patients generally want. My OB has me going in for a huge list of tests, not because I'm particularly high risk but because most of her patients expect/demand it. She look genuinely confused when I said I might not want the nuchal translucency screening.

 

Hang in there Meredith!

post #39 of 61
Thread Starter 

Rozzie, my due date was the 14th but the ultrasounds I've had consistently show an EDD of May 8th based on measurements, so that is my new EDD. :-)

Christeen, thanks for the echocardiogram suggestion. I think you're right - it would be a good idea to have one. I'll certainly look into that.

 

Sarah, they told me that the amnio would give definite results, but I am worried about the needle stabbing the baby. I want to have definitive results so bad...but also don't want to run into another complication as a results of amnio. I'm torn. -- You have your anatomy scan today right? Good luck!! Can't wait to see if you have a baby girl or boy! Keep us updated!!!! :-)

 

I'm feeling a little bit more positive about everything today. Still scared to death, but I rubbed my belly this morning and told baby that I love him...Even if I'm not feeling as much love/excitement as I was before, I think I was just shocked and scared and those lovey feelings will (hopefully!!) come back. Hubby said that no matter what, when I hold him after he is born I will be crazy in love with my baby.

 

Just as I was feeling a little better this morning, I walked into work and was informed that one of my students had been diagnosed with Fifth's Disease and I was advised to "call my OB immediately". ACK! I don't even know what Fifth's Disease is!! But my baby boy doesn't need any more issues, thats for sure! Unfortunately the little girl that came to school with Fifth's Disease sees me for speech therapy because she spits when she says her S sound. So basically, she spits on me twice a week as I help her practice her speech sounds. Fantastic. I emailed the midwife right away and am waiting to hear what to do next. Compared to Down Syndrome, Fifths Disease doesn't sound so bad. nut.gif

 

Can it just be May already?? Can I just fast forward to nursing my baby in bed while Hubby cooks me dinner?

post #40 of 61
Quote:
Originally Posted by MeredithA View Post
Can it just be May already?? Can I just fast forward to nursing my baby in bed while Hubby cooks me dinner?


Couldn't say it better myself winky.gif

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