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prenatal diagnosis? *rant*


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  #1  
March 4th, 2011, 07:31 AM
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Did anyone here get a diagnosis prenatally? How did you handle it? Actually, diagnosis is too strong of a word. We've been told so far that she's got multiple vague signs that point to something chromosomal but don't add up to anything specific. Arg! What am I supposed to do with that? We did an amnio on Monday and the early results came back negative for Trisomy 13, 18 and 21 as well as extra X or Y chromosomes. We should get the rest of the results back next week, I think.
I've been driving myself crazy searching the internet for something that fits what they've found on her and haven't gotten anywhere. Now I'm even starting to second-guess a couple of the things they're telling us are wrong with her. Because I know better than the ultrasound tech who does nothing but scan babies all day?

I don't know what is wrong with my baby and there's not a thing I could do to fix it right now even if I did. I guess this is just one of those moments where I'm not coping well.
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  #2  
March 4th, 2011, 08:04 AM
greenchild's Avatar Platinum Supermommy
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we chose not to do an amnio (long story ) but they said with the u/s Kaiden had a shortened nasal bone and upped our chance of Down Syndrome to 10%. We just read up as much as we could, hoped for the best and prepared for the worst. It can be nice to have a potential diagnosis right away so the dr's were prepared for any issues that might come up during or after the birth.

We are very glad we went to the clinic/hospital we did . . . a friend was pg at the same time so we compared notes about our dr's and her dr's (the local ones)did not do anywhere near the extensive look for the anatomy scan . . . if Kaiden had been born locally it would have been a disaster.
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  #3  
March 4th, 2011, 10:27 AM
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there is no way to diognose what we went through but this is good reasson why I passed on the prenatal screenings. I would go nuts worrying. I know that is not much help, but you could always get a second opinion. What are they seeing that doesn't seem right to them?
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  #4  
March 4th, 2011, 11:47 AM
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As frustrating as it is, we're going ahead with whatever diagnostics they suggest. Our local hospital doesn't have much of a NICU and I want to be prepared and deliver wherever she needs to be instead of having her flown out to a bigger hospital if necessary. And it would be good to know that the doctors will know beforehand that she might need extra care. We saw the perinatologist earlier this week and so far I like and trust everyone there.

Let's see...she's not swallowing for some reason, don't know if it's an esophageal atresia, something with her mouth, or a neuro thing, her wrists seem to bent in and 'stuck' there, they say she has rocker bottom feet, her abdomen is large, her adrenal glands are large and, her lower jaw is small (though that's true of DH and most of his extended family). Because she's not swallowing, I have too much amniotic fluid. But that can be dealt with by draining it off every once in while. And she seems to be enjoying all the extra room.

On the positive side she can and does move her little fingers around, her heart seems good so far, her kidneys seem to be functioning normally, they haven't said anything about her brain or spinal chord, she's at a good size and very active.

I'm trying to do the 'prepare for the worst hope for the best' thing. Most of the time I pull it off, but every once in a while I just feel overwhelmed.
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  #5  
March 4th, 2011, 01:16 PM
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Oh hon, my heart goes out to you! My son was (mis)diagnosed prenatally, and I spent the last month and a half of my pregnancy living what you're living. It seemed like the exact diagnosis changed weekly, and no one could tell us anything difinitive, but their best guess was pretty bad.

I think the only way I stayed sane was, honestly, to ignore it most of the time. I transferred my care to the hospital with the top NICU, did all the kick counts and weekly ultrasounds & stress tests to ensure he wasn't in distress, and forced myself away from Google... Even when he was born and we got a REAL diagnosis, everything I found on Google had nothing to do with how my son turned out.

Try to cherish every momen with your baby, and remember there is no shame in crying or venting or shouting when you get overwhelmed. We are here for you however you need us.
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  #6  
March 4th, 2011, 01:20 PM
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There is no way to prenatally diagnose Ava's health problems, but I wish I would've known and been prepared for it all. I'm sorry you're dealing with the unknown. I hope and pray everything is perfectly fine. If (God forbide) they find something wrong, we are here to support you every step of the way. ((Hugs))
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  #7  
March 4th, 2011, 03:59 PM
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wow I would just try to relax as much as you can, I know harder to do then say. Make sure you are delivering in a top hospital and pray for the best outcome
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  #8  
March 6th, 2011, 06:36 PM
C&K'sMama's Avatar Platinum Supermommy
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There wasn't any way to diagnose carrie's problem prenatally either, but we did have a lot of "scares" (a lot of situations where something would come back "wrong" with a test. I'd cry and worry for weeks during retests only to find out everything was fine)... We have seen several instances where my friends' children were "diagnosed" like your daughter and it turned out to be nothing. (One friend went MONTHS even after her daughter was born being told there was something very wrong, when it just wasn't the case). Personally I love that you're going through with all the testing. I think information is the best thing you can have on your side but that as hard as it is, to try and put it out of your mind. Until there is a definitive diagnosis, there is no guarantee that there is even anything wrong. If there is something, you'll spend the rest of your life worrying about it and don't need to waste precious happy times worrying before you know what it is for sure.
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  #9  
March 7th, 2011, 04:43 AM
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I always said i never wanted the test, sometimes now i wish they would have dont them just so i could have known. But then agian the only thing they could of possibly seen where the holes in her heart. I would try to relax as much as u could it is much better for the baby. And I wish u luck. Keep ur head up
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  #10  
March 7th, 2011, 01:53 PM
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Thanks so much! My DH says the same thing about how being relaxed is much better for her. Since they don't really know much, I'm going on the assumption that she's just a little diva looking for some extra attention. Seriously, we're trying to be prepared for whatever she'll need but in the meantime I'm doing my best to just enjoy every minute right now.
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  #11  
March 7th, 2011, 03:43 PM
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My son's condition couldn't be diagnosed prenatally. In fact, my whole pregnancy with him was perfect, so after he was born and he started having issues, I didn't handle it well.
This time around, I am doing all the prenatal testing, just so I can be prepared.

Know we are all here for you.
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