1/55 chance of Down Syndrome

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1/55 chance of Down Syndrome

Postby MrsJenniferB » Wed Oct 30, 2013 10:51 am

I did the optional testing a few weeks ago to test for Down Syndrome. I believe I tested in 2 of the last 3 pregnancies, all coming back okay. I declined during one pregnancy because I felt everything was okay and didn't want to worry myself over a false positive, but this pregnancy I opted in just in case. I wanted to prepare myself ahead of time if there is something there. So, the doctors office called and I knew automatically what I was going to hear. My doctor said that the baby has a 1 in 55 chance of having down syndrome or another condition, and that at my age (27), it should come back around 1 in 900 or more. She did say that my 19 week ultrasound looked normal, though. I am absolutely freaking out. I am being scheduled for a level 2 ultrasound (not fast enough, I'm going to drive myself crazy)... and they mentioned the amniocentesis, which I'm considering declining due to the risk of miscarriage after. Has anyone been through this? I need advice....
DD ~ 10, DS ~ 6, DD ~ 2, DD ~ 2 months, Pregnant with #5!
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Re: 1/55 chance of Down Syndrome

Postby ceebeebee » Wed Oct 30, 2013 11:16 am

Hi not me personally but my sister had a 1 in 63 chance on her third pregnancy. She was 34 at the time (which is my age now) her previous pregnancies were low risk. She had a 4D scan, to check neck/head measurements which came back fine, and also the amnio. She said the amnio wasn`t the nicest but she needed reassurance, that also came back fine. She now has an extremely healthy 2 yr old girl.
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Re: 1/55 chance of Down Syndrome

Postby fww_is_over » Wed Oct 30, 2013 12:13 pm

Hi,

I don't have experience with this personally as I opted not to test because I had a friend who got the test and also received news that her baby may have down syndrome. She worried for days until the 2nd test came back ok (he is now a healthy 5 year old).

Anyway, just wanted to share with you that 1 in 55 odds sounds terrible compared to 1 in 900 but if you actually do the math the 1 in 55 is only a 1.82% chance. So if it makes you feel better, that means you have over a 98% chance that the baby is perfectly fine.
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Re: 1/55 chance of Down Syndrome

Postby MrsJenkins » Wed Oct 30, 2013 2:01 pm

I have come across so many stories of women who received false positives. Please take heart in the fact the test isn't always accurate and many, many women who received a positive result go on to have "normal" pregnancies and perfectly healthy babies. All my best wishes to you xxx
Tomos Jenkins born Feb 8 2014
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Re: 1/55 chance of Down Syndrome

Postby jjgirl » Wed Oct 30, 2013 6:42 pm

This time I came back in a 1/19 chance. I'm 38 so it was high. I took the harmony test (same as materniT21) and came back 1/10,000. I paid $800 for the test but it was worth it to me! Most likely a false positive. Good luck!
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Re: 1/55 chance of Down Syndrome

Postby TurtleMomma » Thu Oct 31, 2013 7:32 am

I have a cousin with downs and I'm 33 so I am at a higher risk. We opted not to do the early test (it was too much to try and squeeze in my schedule) but will be doing the later test this trimester. If my numbers come back with an increased risk we will NOT do the amnio because 1. It does increase your risk for m/c and unless you would abort a child with downs or other problem why would you put them at risk 2. It doesn't change anything.
My VERY PERSONAL advice is to breath, do the safe tests and u/s and do your research. Find out about your local options for education (both for your and your child), support groups, best pediatricians, etc.
I promise you, this will not change how you love your child, only how you care for him or her. So, focus on your love for you nugget, be educated and prepared, and remember that God has blessed you for a reason.
Everything will turn out as it should sweetie. <3
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Re: 1/55 chance of Down Syndrome

Postby lydsh3 » Sat Nov 02, 2013 1:54 pm

Have you heard when your level 2 ultrasound will be? It's so hard to wait for those kind of test results! I was very hesitant to do the quad test because I didn't want to needlessly worry, but my husband wanted to so we did. The only one that came back as like a 1% chance was trisomy 18, which sounds awful. But our ultrasound looked normal and so I'm not really worried about it. We have another ultrasound in less than 2 weeks, and I figure I'll worry about it then if anything comes up. Hopefully you can get scheduled soon and get some peace of mind, but the HIGH likelihood is that everything is normal. How are you holding up?
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Re: 1/55 chance of Down Syndrome

Postby MrsJenniferB » Sun Nov 03, 2013 12:15 pm

Thank you so much for all of your replies. I really appreciate them :)
Our level 2 ultrasound is scheduled for Tuesday afternoon. I am extremely nervous, but am glad that I don't have to wait too much longer. Unfortunately, from what I have read, even with the level 2 ultrasound, it won't be a 100% "NO" on the baby possibly having down syndrome, unlike the amniocentesis which would be a clear yes or no. If there are no markers on the ultrasound, I am hoping that a doctor can possibly suggest to me that it looks as if everything is okay. I'm naturally a worrywart, and I feel as though having this test done has almost ruined my excitement and replaced it with worry and nervousness. The truth is that regardless of any diagnosis, this baby will have our unconditional love, but I do hope for her that everything is okay. And I know I will stress until the day she's born. As of right this second, I won't be doing the amniocentesis. Any risk of miscarrying my child is too much of a risk for me to take. Any and all advice is greatly appreciated!
DD ~ 10, DS ~ 6, DD ~ 2, DD ~ 2 months, Pregnant with #5!
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Re: 1/55 chance of Down Syndrome

Postby lydsh3 » Sun Nov 03, 2013 4:48 pm

Well we'll be thinking of you. Be sure to keep us updated! I pray that you find peace even with the uncertainty and possibilities.
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Re: 1/55 chance of Down Syndrome

Postby bazil323 » Mon Nov 04, 2013 12:31 pm

I'm so sorry you are going through all this worry! Just try to remember that the 1/55 result does not mean it's a positive result, just a notification of a higher risk. I know it's still scary but like another poster already said, it just means that your risk is 1.8% instead of 0.1% meaning you still have a 98.2% chance of having a baby without Down syndrome. 98.2% is as good or better than the prevention rate of most birth control methods, and we don't blink an eye at thinking they will prevent pregnancy for the most part.

I hope that everything goes well with the ultrasound!
Recently had our first child and have been married since October 6, 2006. I'm 27 and DH 29.

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Got our BFP on March 6, 2013. EDC November 11. Born November 11, 2013!
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Re: 1/55 chance of Down Syndrome

Postby Babycharlotte20 » Fri Nov 08, 2013 5:04 pm

Hi, I just happened to come across this post while googling and felt like I needed to just comment.
I agree with one of the ladies above about the testing. Unless a positive result for Down syndrome will make you consider abortion then I don't see the point in risking any baby's life for the sake of knowing before.I had 3 healthy girls and went on to have a 4th. Found out I was having a little boy and all was great and with a low risk of 1:7200. he had a detailed scan, no problems. I gave birth to him in August last year and within about 2 hours was told he had ds. I was totally shocked to say the least, I just didn't expect it. I feel thankful everyday that I never knew, I never worried. He was just meant for me, its so hard to explain but he makes my life so much happier and better. I love him so much it hurts. I wish that when people are given a diagnosis of ds that they could look in a crystal ball and see what a beautiful journey they are about to embark on, I'm sure that there would be more ds children born and many more mummies blessed with something so magical. If I could bottle up his happiness and sell it, I'd be a millionaire <3 ps. They missed 2 massive heart defects, he had open heart surgery at 6 months old but you would never believe it, he is doing what every other baby is doing his age, my miracle.
Good luck with your scan and relax, either way I promise you will never look back xx
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Re: 1/55 chance of Down Syndrome

Postby MrsJenniferB » Sat Nov 09, 2013 7:21 am

Beautiful post, Babycharlotte20! I completely agree that having a child with special needs can be one of the most amazing blessings. Even though I've stressed about the test result, I do understand exactly what you are saying. Especially so because my oldest is autistic. It can be scary at first, not knowing how to handle every situation, but overtime and with love, it can be a very rewarding journey. My daughter is awesome and I know she was given to us for a reason. As far as the baby bean in my belly, we did have the level 2 ultrasound done, and the doctor said everything looks perfect and there were no markers, but again, ultrasound is not a good tool for diagnosing at all. We did refuse the invasive test as we were told there would be a 1/200 chance of miscarrying her after the test was completed, and I refuse to possibly hurt our child. HOWEVER, we did do the Harmony blood test and will receive the results in just a few days.
DD ~ 10, DS ~ 6, DD ~ 2, DD ~ 2 months, Pregnant with #5!
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Re: 1/55 chance of Down Syndrome

Postby TurtleMomma » Tue Nov 12, 2013 2:15 pm

What a blessing you have babycharlotte20! How cool that God chose you, your DH, and your girls to raise such an angel.

MrsJenniferB, I want to thank you for posting your question and fears on this board. So many women go through pregnancy with fears and worries that they bottle up and that's not healthy. I hope that all of us on here have been helpful, supportive and loving to you as you wait for your test results and your u/s today.
Remember that we are here for you no matter the outcome, no matter your feelings - which are all valid, and no matter your questions. None of us know it all, but we can love each other through it all.

Keep us posted sweet girl!
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Re: 1/55 chance of Down Syndrome

Postby Sarbear819 » Tue Nov 19, 2013 6:48 am

Hi MrsJenniferB! Although I have no children yet, I am a teacher who works with special needs students. I have been thinking of you so much since I read your post a couple of weeks ago. I just wanted to check in and see how things are going and send you virtual hugs. I hope you are finding peace in whatever the outcome of your tests have been!
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Re: 1/55 chance of Down Syndrome

Postby MrsJenniferB » Fri Nov 22, 2013 7:56 pm

Thank you everyone for the support. I FINALLY received the results today and it shows a low risk, 1 in 10,000, compared to 1 in 55 from my initial blood work. I am completely relieved! It also confirmed the gender, definitely a girl :)
DD ~ 10, DS ~ 6, DD ~ 2, DD ~ 2 months, Pregnant with #5!
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