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Ungood results of 1st trimester screening

post #1 of 23
Thread Starter 

I heard from my midwife yesterday that the results of my first trimester screening weren't terrific.

The physical stuff on ultrasound was fine - good NT measurement, and nasal bone present. But when the blood test results got factored in, there's a 1 in 17 chance that the baby has Down's. The expected ratio for my age is 1 in 86.

I'm expecting the MaterniT21 results by early next week. If the results of both of these tests had been good, I would probably have foregone amnio. Now I'm thinking that I'll probably do the amnio, for my peace of mind. But I don't want to think about what I will do if it confirms a trisomy.

Meanwhile, trying to focus on the fact that 1 in 17 means a 94% chance the baby is chromosomally normal. I'm mostly feeling okay, and not too worried. After an initial freakout, my vibes are good. But I will certainly appreciate your prayers and good wishes while I await these results. Also appreciated: stories of your ungood ratios for 1st trimester screening that turned out fine, with a normal, healthy baby.

post #2 of 23
I'm so sorry! This must be so stressful.
I can't give any personal stories, but when I was last pregnant a woman on that board experienced the same thing. It turned out fine.

I hope you get good news next week!
post #3 of 23

So sorry!  That must be soooo scary.:Hug

post #4 of 23

:grouphug

 

oh mama!

 

i wish i had a great story to encourage you!  but i don't.  so love and prayers to you and yours!

post #5 of 23

sending positive thoughts! it may seem impossible but focus on that 94%. 

post #6 of 23

Sending positive thoughts and prayers your way!  I hope the further tests come back and everything is okay!

post #7 of 23
I have a friend who had very similar results to yours last year. Can't remember what the exact #'s were but her baby is just fine, no downs. He'll be a year next month, he is healthy, beautiful and absolutely perfect. Whatever your out come, all Will be well. Praying for you and your family.
post #8 of 23
FWIW, the blood test/NT screen is notorious for false positives. Harmony/Maternit21/Panorama are almost as accurate as an amnio.

So hopefully you'll get some reassuring news in a week or so.

Good luck!
post #9 of 23

It sounds like most people who get those tests done, just end up needlessly worrying. My husband's aunt told me specifically not to get any of those tests because the majority of them don't predict anything too accurately. She had one baby before 35 and one after. They did not offer those tests to her first but because she was 35 with the other, they immediately told her that she needed to do all those tests. A lot of them did not come out good and so worried a lot. Her daughter who is now 12, is perfectly healthy. I hope all turns out well!

post #10 of 23

if you are expecting a baby with Downs then I will tell you congratulations!! your life will change for the better. while I agree it's scary to have a child with a disability, they are the sweetest treasures. I am a bit bothered that your midwife looks at a child with down syndrome as 'not terrific' screening. For one thing it's ignorance. I do not have a child with DS, but I have plenty of friends who do because of the line of work I am. I used to be scared to have a baby with DS..but I am not anymore. I am going to be 40. I knew my chances when I wanted another baby. If our baby has it, we will embrace the treasure that God have given us.  amnio could kill your baby, it's not worth it.  I am sorry this news is stressful for you,...and I am sure shocking but it does not in anyway have to change the dreams you have your baby if your baby does have down syndrome.  your results could have showed that your baby had spinabifida, or no brain, etc which is terrible news...  I pray that you find peace very soon. If your baby does have DS, do all the research you can. There is so much ignorance out there! and check out www.noahsdad.com   he has inspired me to find the the joy in all children with down syndrome. Praying for your peace.. 

post #11 of 23

That is such a fantastic link, THANK YOU for sharing!! It's easy to shrug off down syndrome as a curse and something you would never want your child to have, but it's also quite a beautiful journey. The love that Noah's father feels for him is surreal, absolutely beautiful. 

post #12 of 23

you are so welcome Fragolina.. I meant every word. I used to be terified of having a baby with DS, but I am a photographer and I photograph special needs kids all the time, and they are such treasures. They are little angels that do not have a mean bone in their body. The womb is the most dangerous place for a baby with down syndrome to be because of the ignorance. I am sad that this womans' midwife made it sound like her baby was defective if it had DS. 

post #13 of 23

@camerahappymom thank you.

 

I hesitated writing anything on this thread because sometimes I wonder if my perspective is too skewed so it was nice to read your post.

 

background: I have a 49 year old aunt with down syndrome who I have so much love for, it makes my heart almost burst. I also had an uncle with Cerebral Palsy who I didn't get to know as long as I have my aunt, but he was an extremely special person in my life while he was alive. 

 

A little over a year ago my SIL gave birth to a sweet little boy, who was diagnosed with Down Syndrome after he was born. I was uncertain how to comfort my BIL and SIL and the rest of my husband's family. How I wanted to react to the news: "OH my god! Congratulations! I feel so lucky for us, thank you for bringing this sweet child into our lives! Happy happy happy!" but I knew that wasn't appropriate. So, I called my extremely wise father to ask him what he thought. He said:

 

"You and I both know how special this little boy is, and how much happiness he will bring into their lives. This is something that they will learn in time. Someday they will look back and wonder how they could have ever feared his diagnosis; and when they do, you can celebrate with them... But for now, you need to respect their need to mourn the loss of the little boy who they thought for the last 9 months they were going to have and just assure them all of your love and support."

 

Oh, dads. So smart, they are! A year and a half later and my nephew is a very happy and healthy "normal" little boy who is adored by his mom dad and big sis (and who drives his auntie absolutely mad with his big toothy grin and sloppy smooches!)

 

@Frankincense I fully understand and respect your worries. I think that you should do the amnio if it will calm your heart... best case scenario for you, everything will come back negative and you can continue on with a stress free pregnancy (I know more than a few women who have had false positives). Otherwise, you can begin the important journey that you hadn't quite planned. Either way, I'm here with full support if you need it!

 

Here's a poem that all mothers might benefit from reading http://firefliesofhope.typepad.com/fireflies_of_hope/2010/11/welcome-to-holland-by-emily-perl-kingsley.html 

post #14 of 23
Thread Starter 

@camerahappymom, it wasn't "this woman's" midwife who called this result not terrific, but This Woman herself. 

 

I was reluctant to start this thread, because of the kind of response you posted. If you read my original post carefully, you'll see that I specifically requested the kind of responses that would be helpful for me: good wishes, and stories of false positives that turned out to not be positive after all. 

 

I don't appreciate your assumptions, or your judgement of me, based on your assumptions about whether or not I would choose to give birth to a baby with Down Syndrome. You are obviously allowed to feel great about it if your baby were diagnosed before birth. But you are not welcome to impose that view on me, or to tell me I should be happy about it.

post #15 of 23

I am very sorry how you feel. I never said you would never choose to have a baby with down syndrome. I am sorry you thought that. Truly I am. I was just giving some information that I know about and trying to encourage you. Obviously you did not look at as encouragement, and maybe several years ago I wouldn't have either. I would have responded the same way as you did...in that I was attacking your character and judging you. I truly did not mean to do that at all.. I didn't mean to come across that way. but I stand by what I said.. every baby is a gift. I am not assuming you do not feel that way. I am sorry this is such a hard time for you. I truly hope you get the results you are looking for and through it all you find peace. It's very scary when you are so worried about your baby not being healthy, etc.. As far as being allowed to feel great about my baby, it's because of a decision I have made. I made the decision to get pregnant at almost 40 years old, I knew the risk...I have been offered amnio and CVV testing, but I turned it down because of the risk of miscarriage. And the chances of everything being fine with your baby are very good. 

post #16 of 23
@camerahappymom I can see that you were looking to encourage Frankincense, and I think it's honorable that you are offering encouragement from your unique perspective. I personally agree that they are a blessing, but it's also scary to know that your child may not be who you were expecting.

@frankinscense, we understand this is a valid fear. I'm praying that you have a healthy babe without any complications. I don't have a story to encourage you because I simply don't have the experience, but i can say with confidence that sometimes things don't go as planned or hoped for, but we can still thrive as people. Please try to take heart in that.

That said, you really do have a great chance of having a baby without down's. Think of this--you had a higher chance of misscarriage a few months ago when you found out you were pregnant than the risk your child has now (from what I'm aware of). And you are still carrying your child! Those odds were much worse. It is very likely that your child won't have down's, in fact, your odds are 16 to 1! That's pretty good.

Also, please try to have a little grace with the rest of us--no one meant offense, only to encourage you.
post #17 of 23

We miscarried in September .. so I was really scared for awhile that we would miscarry this baby. ..I really did mean to only encourage you. but I know it's very scary to not have what we feel is the perfect child. My son has autism. for years I felt like people were judging me as parent, etc.. and they didn't' like my son because of his behavior. I am over it now. It took awhile, but I got past it.   We have a 14 year old, 11 year old, and a 2 year old.. and the first words out of my mom's mouth when I told her about my son (the 2 year old) was down syndrome. and this was when I wasn't nearly as educated..but it made me so mad! I felt like she wouldn't want a grand baby with down syndrome.  To date..I am almost 14 weeks and she still does not know because of her behavior with that pregnancy and my miscarriage back in September. I know that having a baby with down syndrome is not what any parent asks for.....but I believe if God chose to allow it to happen to one of our children  that we will find our peace, a new normal, and a new path for our family. If my family doesn't want to be part of it, then so be it. 
But we will walk the path that we have been given.  I have not had any testing done yet. I was supposed to do that last week, but insurance got screwed up and denied all my testing :( so I had to get it all fixed. but I still have my peace. I am just very happy to be pregnant again. I have been praying for you. Praying for you to be filled with peace. I do believe prayer changes things..and that God can perform any miracles He wants to, but sometimes the miracles He performs are in us.

post #18 of 23

I took the Harmony test. It is a DNA screening (as MaternaTi) and the results can absolutely be trusted. It is as good as a paternity test as far as accuracy. My odds of having anything "wrong" were .01 meaning I had a 99.99% chance baby was fine. I suppose if you really want the amnio then do it, but from what my midwife told me the DNA test can be trusted 100%. (Well, 99.99% anyway) I didn't even do NT or anything else because of the results. I bet those come back just fine!!!!

post #19 of 23

you haven't updated your baby yet.. how is your little one doing?? I hope you are both doing well

post #20 of 23
I just wanted to point out that the blood tests aren't just used to screen for t21. They are also used to screen for the other, far scarier and lethal trisomies and triploidy, most of which are "incompatible with life". This may be the source of the "not terrific" comment.

I hope everything turned out okay.
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