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Old 02-18-2010, 07:56 PM - Thread Starter
 
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So I had the quadscreen done. I did this ONLY because I wanted to have the ultrasound to see this little bean. I have felt very disconnected from this pregnancy, unlike my previous 2, and just wanted to make sure s/he was there.

Last week I had the second portion of the blood test done and they called me today to tell me that I am "at high risk for the baby to have spina bifida" and that I have an appointment next Wednesday to have a detailed ultrasound, meet with the geneticist and he will be doing the second ultra sound at that point.

Ok, ladies, I am f-r-e-a-k-i-n-g out! I know that this is only an indicator that it is more likely than not but omg. This is not what I was expecting to deal with today. I know I will keep this baby regardless but I am now a huge emotional mess, even more so than usual. And it doesn't help that I have felt off about this pregnancy and that last week the Dr told me she would be concerned if I wasn't feeling movement. Yes, I have been feeling faint movement for a bit but thats ONLY because I have been pregnant twice and know what to feel for. Ugh, this suck so bad and the next week is going to take forever to get here. I guess, it really don't matter one way or another, I will still have my baby. But like everyone else I just wanted it to be healthy and perfect... now it may not be and it hurts. I hurt for the baby and myself. I hate Dr.'s and now they may be a huge part of my life... I wish I never had that stupid quadscreen in the first place.

Has anyone had abnormal results and then everything to turn out just fine?

A wife to A, unschoolen mom to C (7), T (3) & little A (9 months).
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Old 02-18-2010, 08:19 PM
 
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I'm so sorry that you're going through this. There's no way around the fact that it just sucks.

We got abnormal results back from our screen too - my uE3 was very low - so the trisomys were concerns, not Spina Bifida but I completely understand the heart sinking feeling of thinking that things aren't going to be the way you thought they were. We did the level 2 US and it looked pretty good (little spot on the heart, but no hard markers). We ended up doing an amnio and got our results back as all clear.

We are now waiting on an additional test for another disorder that can cause the uE3 level to be low and hope to have that result within the week.

So I TOTALLY know how much pain you're in right now.

Know that we are hear to listen to the fears if you need to talk about them and that we will be sending positive thoughts your way for strength and wellness.

Me (36), my DH (37), our DD (12/07), and our new DS (7/7/10)
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Old 02-19-2010, 10:27 AM - Thread Starter
 
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I am so sorry that you are going through this. I am so happy that you all got the all clear for trisomys, that is much scarier than spina bifida. I hope that you get another all clear on the uE3 low levels.

How are you getting through this? I am so worried that I am having an even harder time eating and keeping it down. I can't sleep well. Last night I went to bed late only to dream all night about a baby who was born with a hole in its back and wasn't doing well to wake up and realize that it can be a reality and not a dream. I am scared. I am worried for the baby and what it may take away from my other children. I am petrified of a c-section, and spina bifida babies are born c-section. I am so upset that I probably wont be able to breastfeed and I doubt if baby wearing will be an option. This whole situation is challenging all the things I feel very strongly about. I don't know how to bond with a child that I can't nurse and wear.. that may sound stupid but its all I know. I am praying that this is a false positive but I can't help but to expect the worse. I wish I never had that stupid screening done, now the rest of my pregnancy is going to be... like this? I can only hope not. My heart hurts and I am so scared of our future.

A wife to A, unschoolen mom to C (7), T (3) & little A (9 months).
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Old 02-19-2010, 10:35 AM
 
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aww, i'm sorry you are having to deal with this I hope, of course, that everything is ok when you have the tests next week. And this may not be the right thing to say right now but I do know a couple whose baby was born with a very mild spina bifida and a surgery after birth corrected it and he is now a completely healthy and normal two year old.

Amy, Army wife living in S. Korea, mama to my inverted t c/s baby 04.05.08 and my VBAC with inverted t baby 07.24.10
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Old 02-19-2010, 11:28 AM - Thread Starter
 
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Originally Posted by Amynf1 View Post
aww, i'm sorry you are having to deal with this I hope, of course, that everything is ok when you have the tests next week. And this may not be the right thing to say right now but I do know a couple whose baby was born with a very mild spina bifida and a surgery after birth corrected it and he is now a completely healthy and normal two year old.
Anything positive at this point is a good thing. Thanks for that little story. It makes me feel better that babies can grow up and live a normal life with a neural tube defect. I hope, if this baby does have spina bifida, that it the best case scenario and can grow up without it hindering its ability. I hate the idea of any child growing up and suffering physically or mentally.

A wife to A, unschoolen mom to C (7), T (3) & little A (9 months).
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Old 02-19-2010, 12:09 PM
 
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Originally Posted by chase_mommy View Post
Anything positive at this point is a good thing. Thanks for that little story. It makes me feel better that babies can grow up and live a normal life with a neural tube defect. I hope, if this baby does have spina bifida, that it the best case scenario and can grow up without it hindering its ability. I hate the idea of any child growing up and suffering physically or mentally.
hey mama, crashing here. I wanted to share that I have heard MANY stories of mamas getting positives or high readings indicating something on these tests and it turns out just fine. If your baby does have Spina bifida its a good think to know ahead of time because the baby is handled differently at birth and then can have immediate surgery...depending on the severity. Ive heard many success rates with babys coming out fine from surgery as well. Not to scare you or anything but I too got a positive with my first... they also said a risk of spina bifida. Well she didnt have spina bifida, instead a fatal neural tube defect. But that condition is very rare. I think you will be just fine. Praying for you.


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Old 02-19-2010, 06:01 PM
 
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I'm so sorry this has you nervous and stressed. That is exactly why I stopped getting the quad screen done. I got a false positive with my second child and it freaked all of us out. I did a ton of reading and this test has a high rate of false positives so I declined it for my next 2 kids and for this one. I just didn't want to go through that again. Stay positive!! I'm sure it will all be ok!

Sky, mama to dd 10/00, dd 3/02, ds 7/04, dd 3/07, ds 7/10, stork-girl.gif11/12 & married 11 yrs

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Old 02-19-2010, 06:11 PM
 
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crashing from august.

i had the testing done for my 2nd baby. the blood results came back horrifying - to the point of my doctor literally begging me to abort. seriously. we told him we were keeping the baby regardless. at that point he begged us to to an amnio so that we could find out how bad things were and to prepare for the worst. we had the amnio done. no insurance and $1200 later we found no spinabifida and no down syndrome. HOWEVER, there were other "problems" that they found. Fluid around the heart and fluid around the kidneys. they then sent us to a neonatal heart specialist. (again, out of pocket $$$$) his prognosis was that either it will resolve itself or more likely the baby would be stillborn or die shortly after birth because the heart would not grow properly...this was at 18 weeks, so I had 22 more weeks to get through to plan and grieve my babes probable death and burial.

20 weeks later i gave birth to a completely healthy little girl. i went for weeks thinking that she would die at any moment. i am surprised that i am as sane as i am now because of the trauma this caused me.

14years later, she is perfect. to think about how many babies are aborted because of these tests is so very sad to me . please dont make any decisions or stress yourself over a blood test that MIGHT indicate something.

anyway, I have had 3 (homebirthed) babies since and am preggo with #6 - needless to say, i have never tested again. and I never will.

there are tons to false positive stories out there. please dont stress yourself mama.

Christian helpmeet, homeschooling, homebirthing, homesteading wife, happily raising our family completely naturally. Mother to 5 children, 1 angel and new baby due in August!
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Old 02-19-2010, 09:04 PM
 
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Originally Posted by chase_mommy View Post
I am so sorry that you are going through this. I am so happy that you all got the all clear for trisomys, that is much scarier than spina bifida. I hope that you get another all clear on the uE3 low levels.
We got our last test back today and..... ....ALL CLEAR!!!! I literally couldn't speak through the emotions. All of their tests say that this is a healthy little boy. (We still have an elevated risk of 3rd trimester "complications" (anything from PIH to stillbirth) but we are being watched closely and are very hopeful that we can manage whatever comes up.)


Quote:
Originally Posted by chase_mommy View Post
How are you getting through this? I am so worried that I am having an even harder time eating and keeping it down. I can't sleep well. Last night I went to bed late only to dream all night about a baby who was born with a hole in its back and wasn't doing well to wake up and realize that it can be a reality and not a dream. I am scared. I am worried for the baby and what it may take away from my other children.
I wish I had an easy answer for you, but I don't. I went through a period of denying that I was pregnant (just not thinking about it at all), I cried a lot, I was scared, and I moped around. Clearly none of this is helpful other than to say that what you're feeling is normal and doesn't make you "bad" in anyway.

The one thing that I did find helpful was to focus on my DD - she's a little over two and completely amazing! I really focused in on being totally present with her - this not only kept my mind off the scary thoughts, but brought me a few moments of pure joy.

Quote:
Originally Posted by chase_mommy View Post
I am petrified of a c-section, and spina bifida babies are born c-section. I am so upset that I probably wont be able to breastfeed and I doubt if baby wearing will be an option. This whole situation is challenging all the things I feel very strongly about. I don't know how to bond with a child that I can't nurse and wear.. that may sound stupid but its all I know. I am praying that this is a false positive but I can't help but to expect the worse. I wish I never had that stupid screening done, now the rest of my pregnancy is going to be... like this? I can only hope not. My heart hurts and I am so scared of our future.
When you were pregnant with your first you didn't know how BF would go, or whether this baby would like to be worn, etc. And you found a way to love them, you figured out how to be the best mum you could for their individual personalities. If this little one does have special needs you will figure out the new best mum for them as you go.


BUT remember that you don't know anything for sure right now. Most women who get positive screens have an unaffected baby. The chances are that you will not have to face any of the fears that you're now thinking about.

If you want to talk more feel free to PM me. Even though we're on the other side of this now, the fears are all too fresh in my mind.

Me (36), my DH (37), our DD (12/07), and our new DS (7/7/10)
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Old 02-19-2010, 10:45 PM
 
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Our first pregnancy we did the testing and it came back positive for downs as well as few other things, I can't remember. I was freaking out as well. I was only 18 at the time and was so worried about it. We did all the extra ultrasounds and it all still came back positive. We were planning on having the baby and dealing with the issues when he was born. He was born and he was perfect. Not a single thing wrong with him. Now he's a crazy, sweet, back talking, sassy almost 8 year old. Never has had any sign of anything ever being wrong.

Aimee Blessed Momma to 4 amazing boys, P ~ 9 H ~ 7 J ~ 4 and B ~ 1.  Happily married to D Living my almost dream life on an urban homestead, hoping for our forever land to find us soon!

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Old 02-20-2010, 12:16 AM - Thread Starter
 
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Thanks for all the stories and advice ladies. I like to hear other peoples realities while I wait for my own.



Quote:
Originally Posted by tarasattva View Post
We got our last test back today and..... ....ALL CLEAR!!!! I literally couldn't speak through the emotions. All of their tests say that this is a healthy little boy. (We still have an elevated risk of 3rd trimester "complications" (anything from PIH to stillbirth) but we are being watched closely and are very hopeful that we can manage whatever comes up.)
I am so so so so happy for you!! I can only imagine the relief that you feel. Congratulations, that is such great news!



I'm really trying to let this all soak in. I am the type of person that has to know all possible outcomes so I don't feel blindsided when I get the results. I found out today that the odds are 1 in 11. Thats a bit nerve wracking but to flip it there is a 10 in 11 chance that all will be well... not that I am getting much comfort from that. I just hope the next few days will go by quickly. I know I will feel better (even with bad news) knowing whats going on.

Thanks for all the support everyone, you all are great.

A wife to A, unschoolen mom to C (7), T (3) & little A (9 months).
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Old 02-20-2010, 01:14 AM
 
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Ali, I dont have any words of advice or stories for you But just wanted to offer my support and know that I am here if you need to chat.

Shelly, Mom to Sophia 5 Nicholas 3 & 2 Angels
Its a GIRL! Alyssa Ann 6/29/10 7lbs 5 oz
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Old 02-20-2010, 01:54 AM
 
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oh, I'm so sorry you're dealing with this. Your posts to this thread have really spoken to me. I'm the same way, with wanting to know everything so I can prepare.

Remember that the Quad Screen and AFP are screening tests, not diagnostic, so you really can't have a "positive", true or false. Remember that you have a better than 90% chance that your baby is fine. And remember that we're here for you if not. I've gotten a lot of support here. If you want, PM me, as I've struggled with most of the questions you've raised here.


scifi-convention runners Kate, DH Drew 11/07, DD Cora 12/97. We , ,
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Old 02-20-2010, 06:14 AM
 
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Lots of hugs for you, mama! I'm so sorry that these tests have you so stressed, and really hope that your next appointment can ease your mind.

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Old 02-20-2010, 03:31 PM
 
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Hug hug mama. Know that you have lots of support here and we will all be anxiously awaiting hopefully good news on wednesday.
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Old 02-20-2010, 05:31 PM
 
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I have heard there are a ton of false positives so while I know it is hard PLEASE hold onto hope!

On another note, my baby cousin was born with spina bifida and a club foot and you would NEVER know it today. She is 16/17 and gets around like a normal teenager, goes out, rides quads, horseback, etc. She does have to go to the chiropractor maybe once a week or every couple of weeks and when she had her baby boy last year she couldn't have an epidural.

Prayers and courage,

Ashlee - wifey to Josh , mama to Gavin 9/2007 , and expecting a baby GIRL 7/20/10.
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Old 02-24-2010, 06:27 PM - Thread Starter
 
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Went to the Dr. today and everything looks good! They couldn't find anything that would cause the positive and have decided to write it off as a lab error. A huge lab error at that... my AFP level was 12.5 and normal is 1. Anyway, no matter, yay he is just fine. Yep, I said he, got a nice peebird shot and its a boy! I really didn't want to know the sex but with this detailed ultrasound it really was impossible for us not to know. I am SO happy and SO relieved. I am going to go take a nap, I haven't slept well in days.

Thank you everyone for your kind words, thoughts and prayers.

A wife to A, unschoolen mom to C (7), T (3) & little A (9 months).
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Old 02-24-2010, 09:58 PM
 
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Yay!!!! Hope you get some sleep!! This really confirms why I hate all those tests. i am sorry you had to deal with all of that.

Amy, Army wife living in S. Korea, mama to my inverted t c/s baby 04.05.08 and my VBAC with inverted t baby 07.24.10
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Old 02-25-2010, 01:19 AM
 
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get the rest you need mama! Congrats on your new little man!
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Old 02-25-2010, 12:41 PM
 
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So glad you got nothing but good news!!!

hide.gif Me 41, single mom to modifiedartist.gifdd 4/2001 and demon.gif ds 7/17/2010

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Old 02-25-2010, 04:40 PM
 
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for you! I just had my AFP drawn 2 days ago.

DS is 4!
DD 8/10/10!
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Old 02-25-2010, 04:48 PM
 
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Hooray, I'm glad it's all good news and you can put that stress & worry behind you!
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Old 02-25-2010, 10:23 PM
 
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So happy for your good news!

Your story and the many I have read just like them kept me from getting the second blood draw. I was lightly chastised but I just did not want unnecessary stress.

~Heather, loving my DH and DS with my whole heart. Our newest addition DD July '10
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Old 02-25-2010, 10:31 PM
 
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What a relief! So glad you got this good news.

wash.gif  Me  + bikenew.gif Dh =  broc1.gif  Dd1(9 yrs) + hearts.gif  Dd2(6 yrs) and blowkiss.gif Ds(3.5 yrs)
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