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Old 02-12-2006, 06:01 AM   #1
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dreameedayze HB User
Worried *~UPDATE~*

Hello everyone. I am new here, so please forgive me if I sound ignorant. lol

I had my AFP test done at 16 weeks (or so) and just got "the call" that it was positive. I am 24 and my risk is 1:100. The nurse seemed very concerned and the doctor's office scheduled an appointment with the genetics doctor at another facility. The nurse suggested that I get the amnio, but I am TERRIFIED to get it. After years of infertility and miscarriages, I feel that an amnio would be a one way ticket to trouble. (at least for me and my fears)

I did some research online and I am a LOT confused. Some sites say the AFP test is not accurate and some say that it IS accurate. So I am really back and forth on that. I have my Level II u/s on the 16th. The nurse said they will be looking for "soft markers" on the u/s. What exactly would that be? I have had quite a few u/s since the beginning of my pregnancy, and they always said the baby was looking perfect. Now I wonder if they just missed certain signs. I read online that there are more things than Down's that the AFP tests for. Low numbers indicate DS and High numbers indicate Spina Bifida (and other things.) I am not sure what it detected, they didn't tell me. Should I just assume it was DS?

Although I am terrified that something could potentially be wrong, I am coming to peace with it. I know, in my heart, that no matter what, we will love her and protect her. Termination would NEVER be an issue.

So.. I guess I just needed some help here because I am so overwhelmed with information and worries and confusion.

What are the chances that there is something wrong?
What are the "soft markers" they are looking for?
If they find those, does that mean she most likely has DS?
Would I be absolutely STUPID to refuse the amnio wether or not they find something on the u/s?
Should they tell me before I leave if they find something?
IF there is soft markers, where do I go from here?
IF There isn't any, does that mean she is okay or is there a margin of error?

Thank you everyone for helping me. I am glad I found this place as I was starting to feel very alone.

Jamie

Last edited by dreameedayze; 02-18-2006 at 03:28 PM.

 
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Old 02-12-2006, 08:57 AM   #2
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Karen W. HB User
Re: Worried

Hi,
I have a friend whose daughter is pregnant, they had discovered soft makers and club feet on her 3 month ultra sound, the Doctor suggested an amino, she declined, then she had an ultra sound at 4 months, the soft markers were gone but the baby still has club feet, the baby is very active. Now with me, I had a DS son born, had no idea he was going to be DS, Three years later I had gotten pregnant, they suggested I have an amino because my DS son was born 6 weeks early and the first week was touch and go, so they felt it would be a good idea, so I did it, I had to wait until I was 4.5 months into my pregnancy, they inject a needle into the left side of the sack way at the bottom of the sack, kind of in the direction of you hip area, there is a spot in that area that the baby cannot reach because it is to big, they took some fluid and two week later we got the results and my daughter was just fine. When they do the amino, an ultra suond is also being done so they can tell exactly where the baby is. The option is yours? If your extremely stressed out it may be better to have it done because high stress is not good for you and baby but if you fine knowing there maybe a probelm and you just want to wait, thats okay to! How far along are you??
Karen W.

 
Old 02-12-2006, 10:17 AM   #3
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dreameedayze HB User
Re: Worried

Thank you for the amnio info. I am almost 19 weeks. I will be 19 weeks when they do my u/s.

I am just worried that the sac will rupture or I will lose the baby. I have had quite a few miscarriages and the thought of losing this one terrifies me. I dont know.. I guess for me.. I will be happy no matter the outcome. So maybe, I feel like if I lose the baby from the amnio, then I acheived nothing. Because it just wouldn't really matter to me. I would ONLY get it to be a little more prepared when the baby gets here.. just in case. I hope that all came out right.

Jamie

 
Old 02-12-2006, 08:33 PM   #4
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Karen W. HB User
Re: Worried

Hi,
Well I must say I fully understand you point, You've had a rough time with pregnancy and I fully understand the fear of losing this child. No matter what the out come is, you will love this child, if he or she dose have a DS or what ever, you will learn what to do. Now like I had said, I had no idea that I was having a DS child until birth, His first week of life was a struggle for him, I have RH negative blood and my husband is A positive, I had the shots during my progeny to prevent the baby having blood problems but they didn't work, why? I have no idea, so when my son was born, his blood was thick like maple syrup, once he had blood transfusion's of RH negative blood, he slowly did a turn around and he got better. He is the joy of my life, he has taught me to have more patients and he has also made me a better person. He brings smile's to my face everyday, my son is now 20 years old and he is such a funny guy and so lovable, he accepts people for who they are, he finds the good in everyone. Make sure to keep us posted on your next ultra sound, we will be here for you.
Karen W.

 
Old 02-13-2006, 09:50 AM   #5
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angelique5 HB User
Re: Worried

I've had 2 amnios... I think as long as you take it easy, and stay off your feet the amount of time they suggest, everything should be ok!

I think the #1 question you have to ask yourself, before you go any further with testing is, "does it matter if I have a child with a disability?" If the answer is no, and you know you could love any child you give birth to... then maybe the testing isn't that important and can be skipped.

The AFP test is notorious for being flawed. Amnio's, while very accurate, are not 100% either (I had a false positive... was told my daughter had a partial chromosome deletion, and that she would likely die before her first birthday, and I should consider aborting... that wasn't an option for us, and thankfully, because she has NO chromosome deletion, she's now a totally perfect 9 yr old spoiled rotten princess! lol)

All the tests are only as good as those people performing them...so none are foolproof.

So, I would say... take a moment to try to put all of those things aside... and think about your baby... if you know that no matter what you'll have that child... why complicate it with any invasive proceedures... those level 3 ultrasounds are safe, and very detailed...

also, find out about those AFP results, because, you're right, one way is downs, one way is spina bifida...and they are VERY different and your doctors should let you know!

 
Old 02-13-2006, 08:41 PM   #6
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dreameedayze HB User
Re: Worried

Thank you, both of you, for replying.

DH and I had a heart to heart the other night and decided we most definately will not be getting the amnio. We feel that we will be blessed no matter what God gives us. If she is born with DS, she will still be a blessing to us and no disability will EVER change that. We will love her the same, no matter what. We feel that the amnio is a risk we just are not willing to take.

I did call my doctor today and she said it was an increased risk of Down Syndrome. She said there was no other risks. (that we are aware of) I realise that testing is so inconclusive and that there is so many errors. This will be the last time I ever have the AFP test done. I honestly think it is worse to have it. Maybe in my case because we wouldnt care either way. Termination isnt and never will be an option for us.

My u/s is thursday and I am getting anxious. I am scared of what they will find, but excited to see her again. (hopefully she is still a her. lol)

I will definately update when I get back. Thank you again!

Jamie

 
Old 02-14-2006, 08:03 AM   #7
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Jaber HB User
Re: Worried

Hi Jamie, My AFP results were negative, and I had two soft markers for Down syndrome. I denied an amnio, because I had the same frame of mind that you have: I wasn't going to terminate anyway, and I'd love my baby however she turns out, while keeping my hopes up that everything would be fine. She does have Downs, I consider her an absolute blessing, and because my AFP was wrong, I will never opt to take that test again.

I just want to wish you luck, go with your gut, and don't let the doctors scare you with percentages and risks. I consider these scare tactics. To ease your mind, you may want to do some research related to any soft markers you may have, and Down syndrome. And if you have any questions, please ask!

 
Old 02-14-2006, 09:09 AM   #8
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dreameedayze HB User
Re: Worried

I have looked online for something to tell me exactly what these "soft markers" are that they will be looking for. But so far I am coming up with nothing except a LOT of medical literature I just do not understand.

Maybe I am looking for the wrong things. Not sure.

Anyone know what they WILL be looking for?

Jamie

 
Old 02-14-2006, 03:01 PM   #9
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angelique5 HB User
Re: Worried

Just to reiterate what Jaber said... my AFP test came back NORMAL when I was pregnant with my (mosaic) Down's son.... so... definately has its flaws!!

 
Old 02-15-2006, 04:48 PM   #10
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Sunlover HB User
Re: Worried

I don't have an answer to your question, but I just wanted to say how I commend you for saying that you will love the baby no matter what, that termination is NEVER an issue! Those children are SO special!! Thank you for having a big heart! And many times those tests are wrong! Sometimes all signs point to DS or retardation, and the "baby" ends up in Yale! You are determined to go through with the pregnancy, so I don't see why you should have the amnio - ONLY if there was some in utero operation that could fix potential problems, otherwise why do it?

 
Old 02-15-2006, 07:52 PM   #11
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dreameedayze HB User
Re: Worried

Sunlover, aboslutely!!

We kinda have a double whammy going on us. I am a carrier for CF (cystic fibrosis) and my son was tested when he was born and he is also a carrier. My husband will be tested tomorrow when I have my genetics appointment. Gosh this week has taken forever to end. We know that we run the risk of having a baby with CF and now, possibly, DS. But, you know, even through all that, I can see the positive side of this. I don't hope that she has either one. But I am confident in my choice to keep her no matter what. My husband is 100% behind me on that decision. I dont know.. I guess if she does have health issues, we are still blessed. And I want her to feel the same way about having parents that will believe in her no matter what.

I have felt her kicking me and moving inside me for weeks now. I cannot imagine the kicks stopping or her moving coming to a stop. It terrifies me to think that something could potentially be wrong. But I know that if we take things one day at a time, we will be okay, and so will she.

Thanks again everyone. I will update when I get back from my sono. Hopefully I can get the time tomorrow afternoon. If not, friday morning for sure.

Jamie

 
Old 02-17-2006, 12:04 PM   #12
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RandomUser01 HB User
Re: Worried

Last time I encountered a doctor who didn't explain everything I needed to know, give me information to help me make decisions and counteract fears that turned out to be generated by my ignorance, I got a new doctor. Remember, if youre seeing a doctor, you are the one hiring him, not the other way around. You could see about making a doctors appointment for the sake of asking questions - this sounds like a complicated problem, so I think that wanting an appointment for the sake of getting questions answered is justified. I would either go back to that doctor and ask all the questions I needed to be satisfied and feel informed enough to know what decision is good, or find a new doctor who would respect my need to know and answer all my questions. This doctor didnt even tell you what the test results mean - definitely either get him to explain what you need to know, or find a new doc.

 
Old 02-18-2006, 03:26 PM   #13
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dreameedayze HB User
Re: Worried

Sorry it took so long to get back here to update. We have been so busy, and I havent had a chance to get here.

The u/s went wonderful. She (yes.. its a girl!) measured perfect. They didnt find any markers for DS or any other defect. The nurse that told me my odds didnt quite tell all. My odds were 1:136, not one in one hundred. That kinda erked me, 36 is a big increase! They talked to me and talked to meabout everything. I felt very informed after I left there. We did chose to NOT get the amnio, and the doctor actually agreed. He doesnt see an immediate reason for us to have it done. They also tested charles (DH) for the CF. We also called my son's pedi to see what gene was mutated with him. He got my gene. So, that means, charles MIGHT not be a carrier. We should know in a couple weeks. Everything measured right on target, or a tad ahead. She weighed 10 oz. I am 19 weeks (or was) the day of my sono. They do want me to come back in a couple weeks to look at her heart again. They had a really hard time seeing the four chambers because she wouldn't quit moving. We are pretty sure we saw the four chambers, but they got no pictures of it. So.. back we go. The doctor explained to me the chances we have, what will happen if she DOES have DS and what happens if she doesnt.

Thank you everyone for being so supportive. I know we are not out of the woods yet. I know that sometimes they find nothing on the u/s and they can still have DS. Hopefully she won't have it. But we are prepared for the fact that she might.

Thanks again.

Jamie

 
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