Really rough appointment...kind of freaking out

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Registered: 05-01-2012
Really rough appointment...kind of freaking out
12
Fri, 10-05-2012 - 1:47pm

So I went to the perinatal doc again today - to be honest with you, I have no idea why we're even seeing this doc. Our regular doc asked if we wanted a more thorough downs screening, and Chris wanted that, so we went ahead with the perinatal doc. So we go in for that and everything comes back normal – it’s got like a 90% accuracy rate or something. Shortly after that visit they call me and leave a message about something serious I need to call back right away. It scared the crap out of me – turned out it was an arrhythmia that apparently usually goes away in like 95% of all babies. Our issue is long gone now. So the next visit they again scare us because they found a downs “marker” – a light color in a heart chamber. It’s no issue but sometimes can indicate downs, so they said come back again. So we did that today. First, they’re no longer worried about the issue with her heart. Instead, they presented us with all new terrible news. Now apparently her brain is measuring slightly large. Chris read up on the internet and it is usually caused by fluid and can often be nothing, but sometimes it’s a downs marker. The irritating thing is our tests came back negative (both of them – the reg doc did a blood test as well). And she has no other markers…enlarged neck or facial disfigurements, etc. I am tired of being scared out of my mind and to be honest I’m sick of going back to this doctor. Most women don’t even have this many ultrasounds and get scared out of their minds every single month, so why am I going through all of this? Now we have to go back for “continued monitoring” and I have to have 3 blood tests done between now and then. I just want all of this to be over. I have a strong feeling that my baby is healthy and I’m going through this misery for no reason.

They shouldn’t be allowed to do this to women who’ve already suffered through miscarriage. It’s just cruel. He even recommended an amnio so we can be 100% sure about the downs and I flat out refuse. 1% risk of miscarriage is too high for me and I don’t like the idea of them sticking a needle in my baby. The thought of hurting the baby is just too much for me. And honestly, there’s zero chance that I’d terminate the pregnancy anyway, so what is the point of putting her and me through that? The only positive thing in all of this is something my husband read online that said if there is fluid in her brain and the neonatal specialists are brought in early, they can operate right away when she’s born and she’ll have a good chance of being just fine. Whereas if we just stick our heads in the sand and the docs don’t get involved, we could lose her. That’s about the only thing that makes sense to me with regards to spending the next three months terrified and miserable. I guess it’s too much to ask to have a nice, normal pregnancy, huh? What do you guys think? Have you ever heard of this? Do you think doctors sometimes go over the top?

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Registered: 05-01-2012
Mon, 10-08-2012 - 7:07pm
Thank you ladies!!! I reall appreciate your positive words and encouragement. It's so weird that so many people have all had similar experiences. Jen, it's so crazy that were both due on the same day and both of us got told our babies have that light spots on their hearts - I was told that like 1% of the population had this issue. I don't know where these docs are getting their stats they scare us with but it sounds like more than 1% to me! Pink, thank you for the tips on that test. I will definitely bring that up because if I can take one test and then get them to leave me alone and of course not do an amnio, I'm all over that. Thank you all so much - you guys have no idea how much your support means to me!!!!! You're helping me stay sane :-) Anniston says thank you!
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Registered: 10-20-2008
Mon, 10-08-2012 - 11:31am
I'm so sorry Jen. I agree with other posters, is you're uncoomfortable with the additional testing there is no reason to do it. I'm hope everything turns out wonderfully and all this worry is for absolutely no reason!

Shawn 
Mom to DS, July 2009
Expecting our little girl after three m/c - EDD 11/29/12

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Registered: 01-05-2001
Sun, 10-07-2012 - 3:07am
Honestly, I'm surprised they even followed up with a specialist after the finding on the heart. We had the same finding on Luke's ultrasound but my labs were also so low risk that theta devised no follow up. My OB asked if I would do anything different if he did have Downs and we said no. So she said it woul only cause more stress to me during an already stressful pregnancy and not to worry about it. I felt very confident in that decision. I agree with a pp that if you're getting this upset by all the testing just refuse. They can't make you do anything and sincerely shouldn't be pressuring you. I'm all for extra ultrasounds but this stress can't be good for you! I'm sure your little princess is just fine!





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Registered: 06-02-2012
Sat, 10-06-2012 - 5:56pm

Sorry your going through all of this!! I'm no doctor, but I think after all the blood tests and first ultrasounds being normal everything is probably going to be alright.  Doctors can be so weird sometimes, when theres something wrong they dont catch it and when a little thing pops up they freak out, making you freak out.  Praying for a good next appointment, so you can feel better! pregnancy is wonderful, but it is also so scary! 

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Registered: 03-28-2010
Sat, 10-06-2012 - 10:46am

Also, I forgot to say, I can't tell you how many times a pg. gal has been told, the specialis see's something wrong with baby and the baby has been born, perfectly healthy!!

I am glad that my words have been comforting to you, Jen.......just remember, I may need your comforting words, in the months to come.  :smileywink:

Kiki (hit my magic age of 45 and no longer TTC),but mom to a beautiful teen DD & 2 angels in heaven & married to my best friend

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Registered: 09-14-2011
Sat, 10-06-2012 - 9:46am
For your piece of mind, I would tell them that you would like no further testing, I am sure your baby is perfectly healthy based on the first two test and like others have said they were just hunting for anything and everything and you will probably continue to be scared out of your mind as they do so. The stress is not worth it when the outcome (a perfectly healthy baby girl) will be the same. :-)

Christina

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Fri, 10-05-2012 - 7:23pm
I'm sorry you are having such a scare with your pg. My quad screen came back positive for Down's with my DD 1:160. We were scared out of our minds. They kept monitoring us. Then I had bilateral uterine artery notching and they had us freaked out that I would deliver waaay too early and my DD may not survive. The notching went away. Honestly, after 6 m/c's and 13 u/s with my DD, they always found something to make us worry. She is a perfectly healthy 15 month old girl (born early because I developed pre-e), but no health issues whatsoever. My SIL's pg. with my nephew also was fear filled. Apparently she had too much amniotic fluid, baby was measuring small and had cysts on his brain. He is totally healthy too.

Dr.'s have a certain protocol that they have to follow for liability issues. As the pp's have said, if they look hard enough they will find something that isn't quite right, even when there is in fact nothing actually wrong.

Thinking of you!

T.
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Registered: 05-01-2012
Fri, 10-05-2012 - 2:39pm
Thank you Kiki :-) you always provide me with so much comfort. I'm so so so glad you're back on this board - we really missed you!!! I have to remember people like you on days like today because you're an inspiration for me. It helps to think that if someone else can get thru all of that, surely I can handle some scary test results.
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Registered: 05-01-2012
Fri, 10-05-2012 - 2:34pm
Thank you so much. This is really helpful. I was definitely thinking that part about what you said that they can find something abnormal in all of us by using their textbooks. I also feel like they've got a serious CYA issue going on. It's just so helpful to hear that others have gone thru this because I only seem to know people who've sailed thru pregnancy and never saw any specialists, probably refused all tests, etc. you want to be diligent and do the best for your child but then after days like this you wonder am I doing the best for this kid if I'm worrying like a lunatic over everything? You know?
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Registered: 03-28-2010
Fri, 10-05-2012 - 2:33pm

Well, if you've had some testing already & there is a 95% chance everything is fine.....then, it's fine.  I agree these are specialty doctors & they hunt for possible things.

"if & when' I make it to 12 weeks, since I am 44, I have to get bloodwork & NT scan done & they will probably scare the hell out of us & will mention, I need a CVS done.....so I don't 'see' an easy ride for me, with this pegnancy.

I am sure your baby is fine....and all the testing is probably unneccessary.  I would talk to your primary doctor & talk everything over & if you don't want to have anymore tests? then don't. You need to do what you feel comfortable doing.  :heart:

Kiki (hit my magic age of 45 and no longer TTC),but mom to a beautiful teen DD & 2 angels in heaven & married to my best friend