Concerning results from our 20 week scan today- update! 01-29-2016

RNMegan0711 · January 2016

20 weeks today and we were SO excited for our big ultrasound. We went in and had a beautiful scan, lots of baby girl holding her toes, sucking her thumb and kicking me like crazy. Then...we waited and waited for the doctor to come back and see us. Our hearts sunk when she started telling us about the extra fluid that surrounded both of her kidneys but we were then somewhat reassured when the doctor said that this can be normal and can resolve on its own. For a second we breathed a sigh of relief until she followed with "but, there was something else." The doctor told us that our little one has bilateral (both sides) choroid plexus cysts in her brain. She told us not to get too worried yet, that these too can be normal but since I have another "marker" with the fluid surrounding her kidneys, she recommended that we see a specialist to have a more in depth ultrasound and more specific labs done since we had opted out of the quad screening earlier in the pregnancy.

So....fast forward to now, this evening. I've done what I shouldn't do...and have googled ....A LOT. Basically from what I've read is that CPC's are pretty common and occur in 1-3% of all pregnancies and resolve on their own. That being said, I do have another marker with the kidneys. They are specifically looking for Trisomy 18/Edwards Syndrome. I then did some googling about that....and cried and cried and cried. Trisomy 18 is linked to stillbirths and when it doesn't result in stillbirth in the 2nd and 3rd trimesters, then the baby faces severe retardation as well as many different major organ issues.

I was able to get the quad screening lab tests done today last minute and now I'll be anxiously awaiting the specialists call (hopefully tomorrow) so I can make an immediate apt for the ultrasound. I guess my reasoning on posting is to hopefully ease my mind with maybe some other moms out there who have been through something similar and the baby ended up being ok....but mostly I'm asking for prayers/good thoughts our way as I'll be a ball of nerves and raw emotions until we know what we are facing. Regardless......we love this little miracle already, whoever and however she is.

(edited to add pictures- sorry I couldn't figure out how to make them smaller)

Small Update! (01-19-2016)

1st. Thank you Thank you thank you for all of your continued prayers. I'm sorry I haven't been able to individually thank you all but I've read and felt each and every one of them.

Small update is that the specialist office called me first thing this morning and had a cancelation at their office in a nearby town (not the one in our town, but I'll drive anywhere to find out more answers quicker- next apt. in our town office would be next week sometime) today at 1:30 so my husband was lucky enough to get off this afternoon from work and we will be headed there!

I'll keep everyone updated. Thank you again

Update (01-23-2016)

I'm so sorry I haven't been on to update you all- it's been an extremely emotional and trying week for us.

We saw the specialist and the good news was that the kidneys looked fine so, one marker down! The rest of her physical self looked perfect...the specialist said that 90% of Trisomy 18 babies have some other type of physical abnormality so that was also great news! Our Quad Screen also came back negative. The specialist did say that the Quad was only 40-60% accurate at detecting for Trisomy 18 so I had the QNatal test done on Thursday. This test takes 7-10 days to result but it is 96-98% accurate at detecting Trisomy 18. We have a long week to wait but we are confident and have faith that our little girl is just fine.

I want to thank everyone again for their thoughts and prayers....they certainly have been heard and felt.

You all and the support/love you've shown me through all of this and through pregnancy so far. It's truly a God send to have you all to come to with concerns etc. I hope to always be able to provide the same.

I'll let you all know when we have the results from the QNatal in a week or so.

UPDATE 01-29-2016:

We just got the call from the perinatologist with our QNatal results. Our baby girl tested negative for ALL chromosomal abnormalities including trisomy 13, 18 and 21!! Thank you God! And thank you so so so much for all of your prayers. I can't begin to thank you all enough. I'm crying tears of joy right now.

lm45678 · January 2016

No advice or experience- just wanted to say that I am sending good thoughts your way. FX that everything turns out alright!

HBamama2B · January 2016

@RNMegan0711 I don't have a similar experience to share, but would say definitely no more googling of Edwards.

sounds like a really rough day. I hope the referral goes well and the next scans and quad screen eliminate concern/show that it will resolve on its own. I'll keep my FX they all go well!! Keep us updated.

cmillar36 · January 2016

I truly feel your pain. We heard similar news today.

My oldest had too much fluid around her kidneys at 20 weeks. She had many ultrasounds but is now a healthy 5 year old.

RNMegan0711 · January 2016

cmillar36 said:

I truly feel your pain. We heard similar news today. My oldest had too much fluid around her kidneys at 20 weeks. She had many ultrasounds but is now a healthy 5 year old.

Thank you.

We will be saying prayers for you and your family tonight as well.

HBamama2B said:

@RNMegan0711 I don't have a similar experience to share, but would say definitely no more googling of Edwards. sounds like a really rough day. I hope the referral goes well and the next scans and quad screen eliminate concern/show that it will resolve on its own. I'll keep my FX they all go well!! Keep us updated.

You're definitely right on the googling.....:( I'll update as soon as I know anything. Thank you for the thoughts.

laurenm2123 said:

No advice or experience- just wanted to say that I am sending good thoughts your way. FX that everything turns out alright!

Thank you

catherinekate · January 2016

No experience or advice, but plenty of creepy internet hugs and well wishes. Please keep us updated. Hoping for a positive outcome for your little one. ❤️

MsBeachNJ · January 2016

I'm sorry you had a rough day & received concerning news, definitely stay off google! Thoughts & prayers to you that all is well with your little one!!

chelseay416 · January 2016

I'm so sorry! I can't even imagine what would be going through my head or my google search box. I hope everything works out with the specialists though!! Sending lots of prayers your way

violetmarie61516 · January 2016

No advice or experience here but you are in my T&P. I hope you have some good results and everything will turn out okay!

WinniethePoohsPants · January 2016

I can't imagine how you must be feeling :-(
Feel better and T and P

Huskerfanz · January 2016

I'm glad you were able to get in so quickly. I hope you hear back soon and it's good news!

VikingGirl12 · January 2016

I don't know if you've followed my story but we recently discovered our baby has trisomy 21/Down syndrome. So I guess I am going through something slightly similar, but not totally.
I do know how you feel though, waiting those agonizing days for the results. Definitely do stay off Google. There are so, so many women that have markers and it end up being nothing.
We too are waiting for our level 2 ultrasound, it is nex Tuesday. Please let us know how it goes.
Let me know if you want to talk and I'll give you my email (I'm mobile only mostly so I don't see when I get private messages).

mrsb8244 · January 2016

I am keeping you and baby in my thoughts and prayers!! Sending hugs your way through this tough time!

CourtJack · January 2016

So sorry to hear you're going through this. It's next to impossible to stay off google, I know. But try to focus on the fact that all could be ok. And maybe just take some time to yourself to cope with the news and wrap your head around it. Lean on your H and know we're all here to offer you support and a place to talk. Hugs!

susiec923 · January 2016

We went in today for our 18 week scan & had similar results in regards to the fluid in the brain. Both the tech & Dr said that this finding is very common (easily 2-3x a week) and alone is not something to be concerned about. In my case, there are no other markers for concern and the panorama test came back low risk. I asked them if they were in my position, if they would be worried or have follow up testing & they said no (they're both women with children). They told me that my OB will talk to me again next week at my regular appointment, but that they know he'll tell me the same thing. I will not Google; I will not stress.

AOliveira11 · January 2016

No similar experience but sending positive thoughts and good vibes your way.

ahernandez16 · January 2016

You'll be in my thoughts. So sorry you're stuck in limbo. Hopefully you'll have answers soon. I'm praying for a positive outcome for your little girl.

RNMegan0711 · January 2016

VikingGirl12 said:

I don't know if you've followed my story but we recently discovered our baby has trisomy 21/Down syndrome. So I guess I am going through something slightly similar, but not totally. I do know how you feel though, waiting those agonizing days for the results. Definitely do stay off Google. There are so, so many women that have markers and it end up being nothing. We too are waiting for our level 2 ultrasound, it is nex Tuesday. Please let us know how it goes. Let me know if you want to talk and I'll give you my email (I'm mobile only mostly so I don't see when I get private messages).

@VikingGirl12 Omg no....I haven't been keeping up with a lot on here lately. I'm so sorry. Reading this just made me lose it. I can't even imagine...I'm hurting for you and I'm hurting for us because I just...never thought we'd face something like this. Thank you for reaching out to me. I'll definitely be updating...right now I'm just ...waiting...sitting here and reading everything. I'm kind of in a fog.

Thank you to everyone for their thoughts and prayers

melwent · January 2016

So sorry you are going going thru this. My first son had a chronoid plexus cyst at the anatomy scan, amd he is now a healthy almost 3 year old. We just had our anatomy scan last Thursday and this little guy has the same thing. I did the 1st trimester genetic screening though so we know its not a chromosomal abnormality. Might be something for you to think about if ypu have another little munchkin. My thoughts and prayers are with your family that you will get good news from your tests.

RNMegan0711 · January 2016

melwent said:

So sorry you are going going thru this. My first son had a chronoid plexus cyst at the anatomy scan, amd he is now a healthy almost 3 year old. We just had our anatomy scan last Thursday and this little guy has the same thing. I did the 1st trimester genetic screening though so we know its not a chromosomal abnormality. Might be something for you to think about if ypu have another little munchkin. My thoughts and prayers are with your family that you will get good news from your tests.

I love reading how common they seem to be. I just wish we didn't have another marker to go along with it

Thank you so much for your thoughts and prayers.

PBear93 · January 2016

Thoughts and prayers for you. I'm sorry you got such concerning news today.

MamaNicoleof3 · January 2016

I have no experience, but wanted to extend my sympathies as you wait. Try not to worry (yeah right, huh?) and focus on the fact that you love your baby and nothing will change that. Praying for you!

etr152517 · January 2016

No advice but lots of thoughts and prayers coming your way. FX that they follow up with results quickly!

Bee112309 · January 2016

Thinking of you. We got bad news (a potentially fatal congenital birth defect) at the anatomy scan for my youngest daughter. It was the single worst moment of my life, and led to a very stressful pregnancy, but all has turned out well in the end. Praying that everything is okay with your little one.

rachieee2 · January 2016

I'm so sorry. I unfortunately know the pain you are going through. Our NT measurement was 9.7mm at 13 weeks (it should've been under 3mm). We then had a CVs test to rule out chromosome issues but the wait for the results was absolutely brutal. It's hard not to freak out and have multiple melt downs thinking the worst while googling everything. We know our baby doesn't have any chromosome abnormalities but we went back for another scan last week and found out that she now has extra fluid around her lungs and kidneys. She's also apparently missing a blood vessel in her cord. So they are wondering if it's a heart defect or kidney issue. They are preparing us that since the fluid is around the lungs it might constrict her heart so now we can't do a thing and have to wait and hope that she survives until February 8 til we have another scan and fetal echo done to hopefully find out the cause of the fluid. I don't tell u this to add stress but I want u to know u r not alone in this. I was told my baby had a 50-50 chance of Down's, turners or trisomy 18 and we beat those odds so I wanted to give u hope that it might be something else that could be physically fixable. Hope that brings you some hope. If u need to talk to someone who is still going through this as well, I am here

HighFive16 · January 2016

@RNMegan0711 I am sorry that I can't reassure you but I just want you to know that I will keep you and your little girl in my thoughts and hope that all resolves itself. So many hugs to you.
@cmillar36 same goes for you.

totsabounding · January 2016

Oh man...so many T&P for you, @RNMegan0711 ...as well as for the other mamas who have shared their stories here.

BlueJuice · January 2016

Internet hugs to you. With my first daughter's pregnancy I had the experience of dealing with unexpectedly problematic scan results, with the subsequent specialist visits and additional tests that brought on. Different issues, so I can't speak to your actual diagnosis, but I absolutely understand the stress and alarm you must be feeling right now.

I'm a person who wants to know everything there is to know about any given situation, so I totally feel you on the Googling. It's also probably a good idea to keep yourself from doing that, as much as possible. If you can, see if you can get one of your doctors to give you straight talk about what they are looking for, what they expect, and what kind of odds you're looking at at any given time. Having that info helps me feel calm and prepared, but you know yourself best, to know whether that will help you.

Best wishes!

TunieBee · January 2016

I am so sorry. Thoughts and prayers it turns out to be nothing. Are you able to get cell free fetal DNA testing done (i.e. Harmony or Panorama)? It's much more accurate than the quad screen and can help prevent more invade and costly testing down the road.

WSU2015 · January 2016

I'm thinking of you and all of the other ladies who shared similar concerns above. I'm hoping for positive outcomes for all the mamas and babies!

I have a friend whose baby boy had the same brain cysts and they resolved with no long term issues.

HeartLikeMine3 · January 2016

We also were told our baby has the cp cyst on the brain. Its very hard to not just hear baby looks healthy. I had a high risk pregnancy due to a cord issue my first time and I stressed all day everyday only to have a perfectly healthy baby boy. So I am not gonna let myself do that again. Just pray!

mkemommy · January 2016

Thoughts and prayers are with you. I'm hoping the quad test results come back ok.

fishwife799 · January 2016

No experience but just wanted to say I am so sorry you are going through this. I will echo what others have said and step away from the computer. It will only scare you more and cause more stress. Keep us posted on your follow ups. Sending you creepy Internet hugs.

hockeyfan42 · January 2016

Very sorry you're going through all of this. FX your quad results come back quickly and with good news. My thoughts are with you.

aloha5736 · January 2016

Thoughts and Prayers to you and your family!

crdo · January 2016

Keeping you and your little one in my thoughts and prayers.

RNMegan0711 · January 2016

Small Update!

1st. Thank you Thank you thank you for all of your continued prayers. I'm sorry I haven't been able to individually thank you all but I've read and felt each and every one of them.

Small update is that the specialist office called me first thing this morning and had a cancelation at their office in a nearby town (not the one in our town, but I'll drive anywhere to find out more answers quicker- next apt. in our town office would be next week sometime) today at 1:30 so my husband was lucky enough to get off this afternoon from work and we will be headed there!

I'll keep everyone updated. Thank you again

NicknShan · January 2016

Sending lots of thoughts and prayers! Please keep us updated. How soon will you get additional results?

catherinekate · January 2016

Best of luck at your appointment today. Thinking of you.

VikingGirl12 · January 2016

Thinking of you today! Glad you could get in so quickly!

btorgers · January 2016

Good Luck today, thinking about you!!!

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Concerning results from our 20 week scan today- update! 01-29-2016

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