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scary subject...hoping someone can help


Forum: Moms and Expectant Moms of Multiples

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  #1  
August 26th, 2009, 04:27 AM
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Location: Hatboro Pa
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Hello, So back at 12 weeks or so I sat down with my first visit with the peri and my first u/s and he told me he would like me to get a sequential screen because of my age,(33) and my past history of things like high bp and being overweight. They did the blood work and the nt (neck measurements) of both babies, and they gave me those results which said my chances of any genetic abnormalities was 1 in 1000. I had to go back for the second part of the test (quad screen) last week--the same day I had the u/s telling me they were both boys. We asked, and unless the doctor had been keeping something from us, he said everything looked fine with the u/s, I then went and did the blood work.

Yesterday, my reqular obgyn called to give me the results and she said that they were very abnormal and that I needed to sit down with a genetic counselor and weigh my options for amnio. She then said, if it was up to her, she never would have given me the test, as it seems to always be skewed with multiples, that so far both u/s looked good to her, and that I should try not to worry. ( I finally called the nurse back after I settled down and asked for the number, which was now down to 1 in 5. )

We have the appt with the genetic counselor tomorrow, but everyone so far has warned me against the amnio, as its super bad with twins. My hubby says why, when we will love them no matter what, which is true, but shouldn't we look for a more specialized pediatrican, and do other things in preparation.....?

Has anyone gone through this? Been told to take the test, or not, becuase of multiples; have false positives; have had amnio.... Anything anyone can help me with would be appreciated. I will love them both no matter what, but should I find out to prepare, or just let nature take its course.

Thanks.
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Last edited by jlaynie; August 26th, 2009 at 04:37 AM.
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  #2  
August 26th, 2009, 04:53 AM
Sweetpea0708's Avatar Platinum Supermommy
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I was told that the quad screen is usually adjusted for multiples. I would ask your obgyn (since they came back very abnormal) if somehow possibly it was processed for a singleton.

Are your boys sharing a placenta? If so, I have read (not to scare you), that a very abnormal quad screen could be an early indicator of TTTS (twin to twin transfusion syndrome). If they have separate placentas, you don't have to worry about that. If they do indeed share a placenta, I would ask for another u/s.

At the very least, I would ask the geneticist how beneficial will an amnio be? Another option would be to decline the amnio, and interview some specialists as a "just in case". I don't know how immediate care would be at birth, but if it's not something that has to be addressed right at birth, I would skip the amnio and just keep a list of specialists on hand that I've spoken with.

Good Luck and keep us posted.
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  #3  
August 26th, 2009, 05:15 AM
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First off, I am sorry that you are going through all this.

I agree that twins skew the blood test. I never took it for that very reason. I have heard of many singleton pregnancies also getting high risk for downs because of the blood tests and they end up being false.

How far along are you? You said that the 12 week u/s looked good as far as the NT neck measurement right? Did you have your level 2 u/s yet? That one looks for both soft and hard markers for downs (along with other things).

If you think that you can wait, I would wait until the level 2 u/s and see how that turns up. I think the u/s is a good indicator (IMO it is much better than the blood test) They will look at the nasal bone, length of the long bones, and lots of other things that would indicate downs or not. If your baby ended up with no markers or just one soft marker it would put your mind at ease.
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  #4  
August 26th, 2009, 08:55 AM
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My OB advised us not to get the screening done ( I have little to no risk factor though) b/c he had found a high rate of false positive with twins even with the adjustments they make, so we only had our anatomy scan to rule out problems. I think following up with the geneticist is a great idea but I would have serious doubts about doing an amino or at least wait until you had your anatomy scan. Do you have a referral for a peri?? I would think after seeing the geneticist I would follow up with a peri so the pregnancy can be watched more closely.

ETA: I remember some moms with risk factors in our MOM group getting CVS testing done in the between 11-13wks which can give the most of the same results as an amino without having to wait until 16wks.

Good Luck and keep us posted!!!
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  #5  
August 26th, 2009, 12:15 PM
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I had an amnio done at 26 weeks for both girls. They are identical and shared a placenta. I declined the screening tests. I had the amnio done because Madison had a Diaphragmatic Hernia. They wanted to see if their was a genetic abnormality. It was not genetics and are not sure what caused the hernia. I had the girls 2 weeks later due to me developing HELLP. I had contractions during the procedure but they stopped and everything was fine until a couple days before I had the girls. It is a major decision and you should sit and talk to a genetics counselor to decide what is best for you. HUGS!
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  #6  
August 26th, 2009, 12:47 PM
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I am so sorry you are going through this, and I know exactly how you feel! We declined all the screening tests - I was only 30 at the time, and I figured my risk was very low, and the results might be skewed with multiples, so why do it, when it wouldn't affect our decision to have the babies, right?

Throughout the pregnancy my primary doc was a Peri, so I had many ultrasounds, and everything always looked great until 33 weeks, when a congenital abnormality strongly associated with Downs was found (duodenal atresia - 30% of cases are seen in babies w/ Downs). We definitely did our share of freaking out. I regretted not doing the screening tests, I seriously considered getting an amnio (just so I could KNOW), but ultimately we did nothing. We educated ourselves on the possibilities and came to terms with the fact that one of our babies might have Trisomy 21. We decided that we'd love this little boy with our whole heart no matter how many chromosomes he had! As it turns out, when he was born, he did have the intestinal issue, but there was no Downs. We were relieved, but because we'd prepared ourselves in advance, we would have been ok if the opposite had been true.
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  #7  
August 26th, 2009, 01:19 PM
mayandsofiasmommy's Avatar Platinum Supermommy
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First of all, you are young. I got pregnant w/ mine at 34

2nd, the quad screen is not accurate w/ twins!!!!! Your NT scan looked good, so I would think that it would be ok. Also, if they didn't see any markers on the u/s I wouldn't be too worried. Honestly, I wouldn't want to risk the amnio since they would have to do 2.
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  #8  
August 26th, 2009, 04:28 PM
Jessy133's Avatar Mega Super Mommy
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I just wanted to add my experience. I am currently pregnant and havent had my twins yet. I had my 12 wk NT scan and they said all came out fine and everything looked normal. I also had done bloodwork that day and also 2 weeks later, I went in at 16 wks 2 days for my level II scan. They had told me that according to my NT scan and my bloodwork that I had a negative screening. Again a negative screening doesnt mean that you are for sure not having a baby with a chromo. prob. but jsut your chances are lower. The Peri and my OB never told me anything about bloodwork being skewd becuase of twins. They told me that my chances were a 1 in 4600 for one of my babies having downs.

As they did the level II scan, the peri found that my baby girl, had what they called a "bright spot" in her heart. This is basically called Echogenic Intracardiac Focus and its a soft marker for Downs. I completely freaked out! My doctor though didnt seem too concerned. He basically told me it was up to me if I wanted an Amnio, but that he wouldnt recommend it unless I was really interested in terminating the pregnancy if the results were positive for downs. He said that if I was still going to keep the babies, then to not have it cuz the chances of losing both of them were a lot higher. My husband and I discussed it and just decided to educate ourselves with the info of Downs. Im even looking to see a genetic counsler just so I knwo I have done my research for my just incase.

A lot of woman i have spoken too have told me that they have found what they call markers for downs and had high risk blood tests and their babies have come out fine, and i have also read that a lot of people never have any markers or show signs and their babies come out with downs.

If you really would terminate the pregnancy, then I guess you can take the chance but just knwo that you chances of terminating the pregnancy might even abort the other healthy baby. Which my peri explained to me.

Its a hard decision but the best thing you can do is speak with your husband about it. I wish you luck cuz im going thru the same thing right now. and I know how hard and agonizing it is.

Please keep us posted

xoxoxoo
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  #9  
August 26th, 2009, 06:11 PM
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Thanks everyone for your responses so far.

Reading the posts have helped to put my mind at ease and has helped answer some of my questions. My husband and I have been pretty much against amnio to begin with, and knowing that most of you have said to wait unless 100% necessary has reassured me.

We will talk to the genetic counselor tomorrow, but only to get a firmer definition of what it all means, and then wait until our scheduled level 2 u/s right after labor day.

For now, we will just take one day at a time, and I will try not to stress. We love both boys already, and no matter what, we will continue to, so we will listen to the doctors (to a point) and prepare, but we won't put either of them through tests that might not be in their best interest.

Thanks again, and I will keep you posted on everything we learn.
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  #10  
August 26th, 2009, 06:53 PM
tundrababy's Avatar Mega Super Twin Mommy
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I must have missed it somewhere you were having boys - how exciting!!! then again I am partial to twin boys

Do you have names for your little guys??
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  #11  
August 26th, 2009, 07:26 PM
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I have no advice, but I am praying for you and your little boys. Please keep us posted.
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  #12  
August 27th, 2009, 05:27 PM
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Just to keep you all updated:

We met with the genetic counselor today, who gave us all the doom and gloom. For every time we tried to bring up skewed results/false positives/ etc., she brought up that the numbers are really abnormal and vastly off what they should be, and that the false postive rate is only 5%, something like one in 100 women or whatever.
Then she told us that even the level two u/s will probably not show us anything, as only 50% of the cases show up in u/s and that they only way we would know is with an amnio. She said that complications from an amnio are only 1 in 300, whereas the chance of my having a baby with ds is 1 in 5, so the benefits highly outweighs the risks---to which I replied (in a not so nice tone) yeah, but the chance of a ds baby dying at birth is way better than 1 in 300, so really, the risk does not outweigh the benefit! She really had nothing to say to that, except that in the end it was our choice, but if it was her, she would do it (guess its obvious I am not her!).
So we will continue on with our current path- and whether we see something in any of upcoming u/s's or not, or whether we have two healthy babies or two maybe not as healthy babies, we will love them the same, and be happy for the blessing we were given. I will prepare myself, but continue to speak of them (and to them lol) as if they were the most perfect precious little people in the world.

Oh and we have not decided on names yet. We are still debating. Hubby is of the belief that they have to have names that no one has ever had before.....and I like names like Joey lol.......so we will see. I am sure somewhere there is a compromise
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  #13  
August 27th, 2009, 05:33 PM
mayandsofiasmommy's Avatar Platinum Supermommy
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Those false positive rates do not account for twins, I think. Also how can your NT scan be great and then this be 1 in 5 for Down's? Makes no sense. And my peri told me that yes you generally WOULD see soft markers on the level II u/s.
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  #14  
August 28th, 2009, 02:26 AM
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Im sorry you are going thru this. It must be difficult.

Personally if it were me, I would want to know all possible medical conditions prior to the birth to allow myself time to educate myself on what could occur or what to expect. I would also seek another specialists opinion without telling them the results of the first place. If someone screwed something up at the first place and the numbers are off, everyone looking at those numbers only has that to base their opinions off. Either way, I hope everything turns out okay for all of you.

We also picked names that no one else had. I mean no one else had. 3 of our 4 children are like this. Guess I am fond of unique names.
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  #15  
August 28th, 2009, 09:14 AM
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I'm so sorry you are having to go through all this. Like you, we are facing some uncertainties w/ our son. It is the hardest thing in the world to deal with b/c you are truly helpless. My thoughts are w/ you!
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