Anyone have experience with increased risk of T18?

Xoxo512070 · May 2015

So we did the quad screen test andit came up a 1 in 41 chance my baby has Trisomy 18, this is my second pregnancy and im 29, my first son is almost 9 and completely healthy, anyone have some advice or encouraging stories?? I have been crying for 2 days! I see a genetic counselor June 3rd and a level 2 ultrasound. Thank you!

Xoxo512070 · May 2015

Here are out 12 week and 16 week pics of our beautiful baby, looks perfect and I do not seem markers for it.

weaverinc · May 2015

I don't have any previous experience with this but I was given a 1:20 ratio for Trisomy 18 at 13 weeks (I am 15w6d now). We have decided against any invasive testing and are going to proceed as normal. For my numbers that means there is a 95% chance the baby is fine so your percentage is really high like 98%. I know it's hard but try not to stress. I spent a whole weekend crying and researching before I came to the realization that these tests are often wrong and are only screenings. Hang in there.

Xoxo512070 · May 2015

Thanks so much for your reply! It is extremely hard to not worry I keep looking over my 16 week ultrasound for any signs and im literally driving myself crazy over this! I take comfort in seeing the baby at least doesnt have clenched hands at 16 weeks I just want my level 2 ultrasound but its still 2 weeks away!

weaverinc · May 2015

I did the exact same thing. Looked over the ultrasound pictures a hundred times and don't see any markers. I questioned my husband over and over about what was said at our ultrasound appointments because they always said that everything looked great. You can really drive yourself crazy thinking about it.

Xoxo512070 · May 2015

I think i passed crazy with this already lol

claudia3059 · May 2015

Have you looked into fetal genetic testing? It's a simple blood draw from mom and they can test the baby's dna. It's expensive around $800 but at this point your insurance may cover it. The results come back pretty quickly 3-5 days and they are +98% accurate.

The four tests I know about are Harmony, Maternity21, panorama and Verifi. I would check with your OB tomorrow and see which one they offer. I had to demand it from my OB and agree to pay for the whole test should my insurance decline to pay for it. For my own peace of mind it was well worth it.

fitmama89 · May 2015

Did your OB tell you what markers they found? If not- I would call back and ask how they came to that conclusion. May give you peace of mind & it may not. Either way I would look into further testing. The free fetal cell DNA test may be your next option ... Such as the Panorama, Harmony, Maternit21 (all similar tests just different brands) ... Those are all non-invasive and are highly accurate at screening for various abnormalities. However, the only way to know for sure is by doing a diagnostic test such as the CVS or the Amniocentesis.

I went to a Perinatologist for my NT scan he told told me what each of the markers were that he found. I did the blood draw for the Harmony and am awaiting results. 7-10 days. Ughhhh.

The wait is horrible, I know. Try to stay off google. It certainly has filled my head with awful things. Goodluck & I hope all turns out well for you & baby

Xoxo512070 · May 2015

Thanks all, they found no markers, I had ultrasound @ 9, 12 and 16 weeks and nothing its just because my quad test came back abnormal with a 1:41 chance of T18. He said the genetic counselor would talk with me about the other tests when I go for my level 2 ultrasound on June 3rd, such a Long wait! Hope all turns out good for you to!

thinkpink101 · May 2015

My quad screen came back with a similar ratio. I was a nervous wreck. They found no soft markers and I did the Maternit21 test. It was an agonizing week to wait for the results, but everything came back good. Quad screens have a high rate of false positives for T18, and even if that wasn't the case, looking at it as a percentage makes the chance pretty small. Try not to worry!

angiet727 · May 2015

I was under the impression from my OB that anatomical markers on Ultrasound are sufficient enough to detect whether or not a fetus has 13 or 18. Which is why I didn't initially opt to test for it, other than the ultrasound. She said they'd be able to tell 13 & 18 with just an ultrasound. I hear these quad screens are not very reliable, and still a 1:41 chance of 18 is only 2.43%. While there apparently is a chance, your numbers are on your side my friend--especially since there are no markers on ultrasound.

I had a scare with sandal gap being a soft marker for DS so I know what it feels like to have this news dropped on you. I did end up taking the maternit21 blood test to check for 13,18,&21 and it came back as negative with no detected abnormalities. This test is apparently 99.8% accurate, and I found great comfort in this. I am still going to go to my lvl 2 ultrasound however because I am an RN and used to work in PICU at a children's hospital and subsequently am an incessant worrier, unfortunately for me.

I know what you're going thru and I'm sorry you have to deal with all this worry. It seems most of the people I know have perfectly normal pregnancies without having to worry about all this stuff. But probability wise, your baby will be fine. Maybe you should consider other testing such as amnio or cvs, or the less invasive maternit21 or others like it. That way you could have answers. The chance of miscarriage in amnio is apparently about 1% which is why I have thus far chosen not to do it. Since I heard about my baby's apparent sandal gap, I had to wait 2 weeks to hear the results of maternit21, and won't go for lvl 2 ultrasound til the 26th. So yeah, waiting sucks!

Anyway, good luck darling, Odds are that everything will be fine for your lil babe.

cindee92 · May 2015

Hey. I was given a 1 in 2 chance of my baby having Down syndrome and I know how awful it feels , I cried and cried and cried and then got told they think it looks more like turners syndrome , and I had cvs, then I had something called a micro array and have had lots of scans, and then they said it may be heart problems ... Anyway I am 31 weeks now and all tests came band negative and have finally been told he is absolutely fine. My thoughts are with you, hope this helps as I was given a huge 50/50 chance and am okay x

Xoxo512070 · May 2015

Thanks ladies it does make me feel better, from what I have read about T18 is that they have clenched fists(at my 12 AND 16 week ultrasound baby hands were open) smaller heads (baby seems to have a bigfer head then my 1st son) those are son of the bigger signs and the only things we have really been able to see with our babt because it js veey active. The ultrasound techs in our small community are not trained to see markers and such.

We see the genetic counselor on the 3rd (still 8 agonizing days away) and have the level 2 ultrasound then as well and I guess they will talk with us about the harmony test.

Something I have to question is that my mom had Spina Bifida when she was born, so maybe I carry the gene and it will always be positive? And IF I do carry it will the harmony test still be positive because of it? I have to Remember to ask these

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