TW Panorama Screening- High Risk for Trisomy 18

mageemaay · May 2017

Hi, Ladies:

I'm not sure if my post needed a TW, but I'd rather add it and not need it than upset another mama. I did the Panorama screening test and was called yesterday by my doctor to tell me that my baby has a high risk for Trisomy 18. For my age, the usual risk is 1:1800. My risk is 5:100. My rational part of my brain keeps telling me that I have a 95% chance of having a baby without this issue, but my heart is having a rough time seeing what my risk *should* be and comparing it to what my risk is.

This nugget is a surprise baby. We weren't trying. We were actively preventing, but God knew what He was doing. I hold my faith close to my heart and am trying to pray through this, but I'm really scared. I'm being referred to a high risk doctor to do my 12 week NT scan, but will really be 13.5 weeks for this appointment on May 16th. This feels SO far away. My dr says that if the NT scan is good, he wants me to have an amnio at 16 weeks. If my NT scan is not so good, he wants me to do a CVS pretty soon after.

He did tell me that he is hopeful that this is a false scare. He said that my 8 week and 10 week ultrasound looked so incredibly normal and that normally with babies with T18, he notices something is off by the 10 week ultrasound. I'm praying that due to my age, the 5 in 100 chance, and the fact that so far the baby has measured 4 days bigger at each US with a strong heart beat and lots of activity, that this is all a nightmare that I can wake up from once I get results.

I'm writing this to ask for prayers, positive thoughts- whatever you could send. I'm also writing to see if other mamas have experienced high risk results and have made it to the other side of them.

If you got all the way through this, thank you.

BayCamp · May 2017

Sending prayers, I can't imagine how long the wait must feel until the 16th but hoping baby is just giving you a scare and everything is good.

ElizabethSchuyler · May 2017

Thinking of you. I hope your NT scan shows this is just a scare.

mariposa_767s · May 2017

Sending prayers. Just remember that God knows what He's doing and nothing is unplanned.

DuchessOfCambridge · May 2017

So many prayers that this is just a scare. Even with high risk, 95% is still good odds, but I so understand why you're nervous. Hugs

ugoglencoco · May 2017

Sending prayers and positive thoughts your way.

ShePersisted · May 2017

Oh this is so hard! Sorry mama. Praying it's is nothing but just a scare for you.

JDW0325 · May 2017

Biggest hugs. Hope the next couple weeks fly by and you can breath easy afterthe NT scan!

rms924 · May 2017

@mageemaay hugs and prayers for you. PPs pointed this out, but the odds are in your favor. My very good friend had a similar scare w ds #2 and everything was fine per the amnio. Living through that with her, I totally get how scared you are but I know that the amnio is pretty spot on. Fx for a good next appointment w specialist. How far along are you now?

adirat · May 2017

Fingers crossed everything is fine. I'm so sorry you are dealing with this.

I just wanted to let you know that if your appointment is not until 13+ weeks, it will be too late for you to do a CVS afterward. I would highly recommend you do a CVS now rather than wait for an amnio. I had a CVS and I can tell you it is much less invasive physically than an amnio, and if you go to a good doctor's office that does a lot of CVSs, it has a lower risk of m/c (though CVS and amnios both have very low risks these days -- the numbers you see are all outdated and today it's more like 1/1000). In addition, if you choose to terminate (knowing that the outcomes for trisomy 18 are not good), you have many more options at the time of a CVS compared to an amnio.

I so very much hope that everything is fine and you will get good news shortly. If you have questions about a CVS or want to talk, please feel free to PM me.

kissthesky32 · May 2017

I'm so sorry that you're going through this. The odds are on your side, but it has to be so stressful.

KT&John · May 2017

I'm sorry that you are dealing with this. I know it has to be so stressful. Prayers that it is a false alarm and you get good news soon.

cottingham3 · May 2017

We will be praying! Please feel free to send a private message if ever I can have a special prayer for anything specific. I will always stop what I am doing to praying. You guys will be on my daily list!

bcashaw · May 2017

TeacherMama7 · May 2017

@mageemaay thanks for confiding in us! I pray that it all turns out well! It seems like your faith is important to you, yes? I've been through a couple hard times in pregnancy and leaning on God and trusting in Him as helped. Are you aware that there is a risk of miscarriage if you do an ammnio? If you wouldn't have an abortion if you found out that baby has downs, the risk of the miscarriage is not worth it, in my option. Just my two cents. But like you said, chances are, baby is just fine!

DuchessOfCambridge · May 2017

@TeacherMama7 trisomy 18 is a much different disorder than Down's with a very low survival rate. Even if one isn't planning to terminate due to it, they could still find the risk of an amnio to be worth it to know for sure that everything is ok and have that peace of mind or if everything is not ok, they will not be blindsided at birth or later in the pregnancy. I say this as someone who is also quite religious and would not terminate without speaking to a religious teacher.

adirat · May 2017

@TeacherMama7 Trisomy 18 is not the same as Down's. Outcomes for trisomy 18 (Edwards Syndrome) are less than 10% survival in the first year with a high frequency of still birth. Many women face health issues associated with delivering a trisomy 18 baby as well, and it's something you would want to have confirmed so that -- if you do choose to carry to term and deliver -- you can do so in a hospital prepared to save your life and preserve your future fertility. It is not a situation where the very small risk of m/c associated with a CVS or amnio is relevant TBH.

OP I truly hope your baby is completely fine.

TeacherMama7 · May 2017

Oh, I see! Thanks for the info, ladies!

froggy994 · May 2017

Thinking of you and hoping for the 95%.

Airynn Chica · May 2017

@mageemaay I so sorry your nerves and stress level are so high now as mine would be too. Remember that God knows the plans he has for you. I will join you in prayer that your little peanut is just fine and healthy and that God would not let you be too worried or anxious. Just keep praying when the worry creeps in as we know it likes to do!

av2323 · May 2017

I am so sorry you are going through this. Many positive thoughts coming your way.

cmessamore · May 2017

God is infallible. He has a plan for all of us. Sending prayers and good thoughts to you and baby!

safinn21 · May 2017

I am so so sorry you are going through this. You will continue to be in my prayers and I am hoping so hard you are delivered with good news.

jess0211 · May 2017

Thinking of you and praying for good news!

NYTino24 · May 2017

@mageemaay Are they able to get you in sooner, like next week? I'm sorry you have to worry and wait. I hope you get good results.

lancomechica2 · May 2017

Sending hugs! I can't imagine how difficult this news is to get. I will keep you and your baby in my thoughts.

MississippiCatfish · May 2017

Sending prayers your way.

Karrotelle · May 2017

Sending prayers for your little one and yourself. I can't imagine the fear you are feeling. The unknown in pregnancy can be terrifying. The wait, excruciating. You will be in my prayers!!

deeerfauxm · May 2017

Will be thinking of you and LO, and hope that the odds continue to remain in your favor.

AngieL610 · May 2017

Sending so much love your way.

katherinegbowers11 · May 2017

I haven't done genetic screening before but both my previous babies have had the brain cysts that suggest Trisomy 18 at the anatomy scan. (They were both born fine.) So much of this technology is so new that I'm not sure doctors always know what's normal yet. It can be a scary thing to wait out, though. Your baby knows you love him or her, and that's the best gift you can give him or her, whatever happens.

mageemaay · May 2017

You are the most loving and supportive bunch of mamas. I'm so thankful for each of you who took the time to reply. I feel like I'm just frozen in some awful waiting game. I'm 12 weeks tomorrow and wish my appointment was next week. I may call and beg each day. I'm trying so hard to hold on to the positive. Babies with T18 are normally small, and this baby measured bigger at both of my ultrasounds. It's also more common in females, and we found out that this baby is a boy. We have named him Samuel, and will call him Sam. This name means "God has heard."
Thank you all again for your love, thoughts, and prayers. Please continue to keep baby Sam on your list. ❤️

08-16-08jms · May 2017

Keeping you & Sam in my thoughts... sending love & light your way!

knewton785 · May 2017

Thinking of you. Just remember the odds are still really great and Baby Sam will be just fine!

randicap-2 · May 2017

Praying for you and baby Sam. Continue to rely on your faith and God will see you through. Sending lots of hugs and prayers

Ladybentspoon · May 2017

I'm so sorry you're going through this. I'll be praying for you

Tourmalily · May 2017

You're in my thoughts. Best wishes that everything will be fine

MissMonroe11 · May 2017

I am so sorry you are going through this. I agree with adirat in that you may want to push for the CVS now instead of waiting for the amnio. I had a CVS with my prior pregnancy and it gives you the same genetic information as the amnio but can be done earlier. And with an experienced doctor, it carries very low risk. I am praying for you and baby Sam!

bcashaw · May 2017

@MissMonroe11 do you think you could untag adirat, she had a loss and we are trying to prevent the amount of notifications she recieves.

MissMonroe11 · May 2017

I untagged her and I am so very sorry to hear that.

bcashaw · May 2017

@MissMonroe11 thanks!

Want a personalized experience?

TW Panorama Screening- High Risk for Trisomy 18

Re: TW Panorama Screening- High Risk for Trisomy 18

Choose Another Board

Search Boards

Want a personalized experience?

*TW* Panorama Screening- High Risk for Trisomy 18

Re: *TW* Panorama Screening- High Risk for Trisomy 18

Choose Another Board

Search Boards

TW Panorama Screening- High Risk for Trisomy 18

Re: TW Panorama Screening- High Risk for Trisomy 18