We went for our 20-week scan yesterday, and found out that the baby's ventricles are too large. I guess anything more than 10 is mild, and ours was about 10.7-10.8.
It's hard to get a grasp at risk levels, etc. But the Doc immediately went into all the horrible possibilities; we declined amnio.
What was supposed to be a happy moment was completely ruined; and neither one of us can sleep. Has anyone had experience with this?
I see there are a lot of other tests you can do too to get more information. It does look scary, but I read your case has a better outlook since they are only slightly enlarged. Can you do a level II ultrasound with an MFM? Sorry you're going through this.
No experience with this exact problem, but with my last pregnancy we had abnormal results on the NT exam, so I know what it's like to get confusing and negative results and being scared for your baby.
Like @jlemons-2 asked - did you get referred to a specialist? Did you discuss any next steps like a level 2 scan or a mri? I just did some real quick research and it looks like it's something that might either be a mismeasurement or something that will work itself out, since it was only slightly high.
Any reason you chose no amnio? For me, I wanted to know exactly what we were working with, so I opted for CVS (similar test). That way if something was wrong we had time to prepare - either mentally or physically if the baby was going to have a handicap - or if nothing was wrong we knew not to worry.
Good luck with your next steps and deciding what's right for your family. Just know how you're feeling right now is raw and real and totally normal. I didn't get out of bed for days and didn't leave my house at all for like a week. I could do nothing but sit there and cry. It's a lot to take in and process and you can only do it at your speed. Take it each day at a time and focus on the things that make you feel a little bit better.
** December BMB Siggy Challenge - Animals in Pools **
Me: 31+ H: 32 TTC Since 11/2015 #1 - MMC 6.5 weeks (2/16); #2 - MC due to cystic hygroma at 20 weeks (10/16); #3 CP (2/17); #4 - Due 12.16.17
We are going back for another ultrasound in two weeks to see if it's grown more. As well as doing a blood test in 2 days to see if mom is likely to carry any disorders (we did sequential and everything came back normal, not sure the difference here)
We decided against an amnio just out of protection and that it wouldn't change our opinion of what to do. If we can do the same test after he is born, then we might as well wait.
All of the research I did end up being on the positive side; but since the doctor laid out all of the negative possibilities we are a little jarred.
Everything else in the brain/heart came back normal if this helps.
Is there a different thread to kick this to where more people might have knowledge?
@couple8787 We had a borderline high measurement with our LO at the anatomy scan. His right ventricle was 9.8 and the cutoff is 10. Like you, I worried at any abnormality but I went to PubMed and read some papers. With measurement uncertainty, both your LO and mine were in the range for very mild ventriculomegaly. (The mild range goes from 10 -15, so you're still on the very low end of "mild.")
Here's where working with other scientists helped me out: My boss pointed out that they're making these measurements based on sound that they're bouncing off a moving target and using a human to click two points on the screen and letting the computer do some math to generate the measurement, which is being reported to tenths of millimeters. There's a lot of "noise" in that signal, and therefore a lot of uncertainty about the measurement. His point is: don't freak out yet; it could very reasonably be an estimation error. (I would expect these measurements to come with a plus or minus 1 mm sort of swing in uncertainty, which is irritating when you're fractions of a millimeter away from a decision boundary.)
We were referred to a specialist with better equipment. (Better means higher resolution, so there's a better chance the tech is clicking where the margins actually are, which means the math will hopefully be more accurate, etc.) When she measured the same ventricle in the baby's brain 3 weeks later, our measurement had gone from 9.8 to 8, well within the normal range. We also had normal NIPT results for the trisomies, so these two things put us out of the various risk buckets.
I'm sorry your doctor felt the need to scare you with all of the possibilities before performing a followup to get a second measurement. I hope everything goes well for you and your LO at your followup.
I'm assuming it was your OB who scared the crap out of you? OB's actually know very little about the details of fetal anomalies, and because of this, they tend to err on the side of bad news as to protect their butt from something should baby come out with something 'wrong' and you sue them because they didn't tell you. A lot of obstetrical care is based around litigation and legality, which is sad but true. I had a similar experience with my first. They found a spot on his liver, the MFM at the ultrasound reassured me it was probably nothing and offered a follow up, we went to the follow up, and again the MFM said it was still there but not a big deal and not to worry, it was probably just a variation of normal. THEN I went back to my doctor and she basically did the same as your doctor, scared the mother-living crap out of me and I left there bawling. I ended up reading the report from the MFM on my own, and it was SO reassuring! BUT my doctor had SO little knowledge on the subject, she saw it as an anomaly that needed to be dealt with my specialists and followed closely. In the end it was nothing, and DS is a healthy, happy 18 month old. The moral of my story is please see an maternal fetal medicine specialist. It is their job to know everything there is to know about fetal anomalies and can give you the most up to date information and guide you as to what to expect. I really hope your case turns out like mine and it turns out to be nothing!
It was actually a fetal medical expert; the first scan was at the OBGYN, then went to the hopsital for another detailed scan. Both said similar things, but the fetal medical expert gave us a two-page handout on hydrocephalus.
@couple8787 I have this same issue this pregnancy. I almost did a thread on it until I stumbled across yours. It's almost comforting to know there's another Dec17 mama dealing with this and I'm not totally alone. I have so many questions and there's so much I don't know yet. I had my anatomy scan @ 22w3d gestation last week. On Friday I received an incoming call from my doctors office, and it was after hours, so I just knew something was up. It was my doctor and he said that the fluid levels were just slightly above normal. He assured me that he thinks that they will go down on their own. In the mean time, I'm to go in to the Maternal Fetal Medicine clinic on the 17th for a second ultrasound (their ultrasound machines are more high-tech) I was so bewildered by the call, all I could say was "ok". But now I have so many questions, what does this mean exactly? What were my baby's measurements? Etc Etc. I have my regular monthly OB appointment tomorrow afternoon and I've written a list. I did some research online and did find another baby forum where many mom's responded with their experiences. It is a few years old but the information was helpful.
This! My scan came back with my nugget having a larger stomach. Apparently it can be caused by him chugging amni fluid and not passing it in the time of the scan, but of course they didn't mention that to us. They just told us something was wrong and we needed to see a specialist this week. (Everything else came back normal!) It's frustrating.
I had my anatomy scan at 21w yesterday. We were also told baby's ventricles were very mildly enlarged, but also that the head circumference was very, very large and an indication of craniosynostosis. My 16 month old had craniosynostosis, and it's supposed to be this random occurrence. 1 out of 2500 babies. If this baby does have cranio, I'm convinced it must be genetic. Surely lightening wouldn't strike twice in our family? Seems unlikely. We were also told baby had a club foot, and they suspect some kind of syndrome. I've been referred to maternal/fetal medicine. My doctor went in to all kinds of possibilities, and of course I am devastated. We lost our first baby at 12 weeks gestation. Then our child with craniosynostosis, and now this. I just feel very, very sad.
@RebekahA83 I'm so sorry the news wasn't better. Please, no matter what happens, remember to take care of yourself emotionally and lean on the support of those around you when you need them. Best wishes to you for a positive outcome and a healthy, happy future.
@RebekahA83 I'm so sorry you are dealing with this news. I hope you get better news with the MFM and that things turn out as good as they possibly can.
@RebekahA83 I am so sorry to hear your past and present struggles. Our family will keep yours in our thoughts, and I hope that you will get better news soon. I also hope that you have close friends and family near you to lean on, since internet hugs and well wishes can only go so far.
@rebekaha83 I'm so sorry they found some problems on your scan. I hope meeting with MFM will give you more answers and help you feel more prepared for what ever may lay ahead.
*TW*
TTC 1/2012 Diagnosed : unexplained infertility 6 rounds of IUI and a MC 2/2014, rainbow twins 4/2015 TTC #3 5/2016 Restarted Fertility tx IUI 2 rounds, baby girl 12/17
@RebekahA83 I'm so sorry that you had a troubling anatomy scan. I hope that when you meet with your MFM, they'll be able to help you understand what's going on and what lies ahead. Hugs.
@RebekahA83 I'm sorry that you are going through this. My thoughts and prayers are with you and your family. Hopefully, some measurements were off and everything will be fine. Take care of yourself.
Thank you all for your kind words, thoughts, and prayers. I don't meet with maternal/fetal medicine until the 29th which is about the same time my maternit21 results should be back. I will update then. Thank you again.
Hi! I had my appointment with maternal fetal medicine yesterday. The good news is that my materniT21 results came back normal which helps to rule out trisomies and/or abnormal sex chromosomes. At my scan the maternal fetal doc confirmed club foot and said that he could not definitively say whether or not the baby had craniosynostosis. The ventricles are normal in size (thank the Lord), but "something is off about the skull" and the bones of the cranium "are very thin." The doctor thinks that there is definitely an underlying genetic reason for my firstborns craniosynostosis and now this baby's abnormalities. So they're going to keep monitoring for now. We have opted not to do an amnio right at this moment as I'm 23 weeks. Maybe later when baby could sustain an early delivery if things went wrong. We're worried, but mostly we're grateful that all other organs looked normal! Just wanted to update.
Re: Anatomy scan concerns
Like @jlemons-2 asked - did you get referred to a specialist? Did you discuss any next steps like a level 2 scan or a mri? I just did some real quick research and it looks like it's something that might either be a mismeasurement or something that will work itself out, since it was only slightly high.
Any reason you chose no amnio? For me, I wanted to know exactly what we were working with, so I opted for CVS (similar test). That way if something was wrong we had time to prepare - either mentally or physically if the baby was going to have a handicap - or if nothing was wrong we knew not to worry.
Good luck with your next steps and deciding what's right for your family. Just know how you're feeling right now is raw and real and totally normal. I didn't get out of bed for days and didn't leave my house at all for like a week. I could do nothing but sit there and cry. It's a lot to take in and process and you can only do it at your speed. Take it each day at a time and focus on the things that make you feel a little bit better.
** December BMB Siggy Challenge - Animals in Pools **
Me: 31+ H: 32
TTC Since 11/2015
#1 - MMC 6.5 weeks (2/16); #2 - MC due to cystic hygroma at 20 weeks (10/16); #3 CP (2/17); #4 - Due 12.16.17
We are going back for another ultrasound in two weeks to see if it's grown more. As well as doing a blood test in 2 days to see if mom is likely to carry any disorders (we did sequential and everything came back normal, not sure the difference here)
We decided against an amnio just out of protection and that it wouldn't change our opinion of what to do. If we can do the same test after he is born, then we might as well wait.
All of the research I did end up being on the positive side; but since the doctor laid out all of the negative possibilities we are a little jarred.
Everything else in the brain/heart came back normal if this helps.
Is there a different thread to kick this to where more people might have knowledge?
Here's where working with other scientists helped me out: My boss pointed out that they're making these measurements based on sound that they're bouncing off a moving target and using a human to click two points on the screen and letting the computer do some math to generate the measurement, which is being reported to tenths of millimeters. There's a lot of "noise" in that signal, and therefore a lot of uncertainty about the measurement. His point is: don't freak out yet; it could very reasonably be an estimation error. (I would expect these measurements to come with a plus or minus 1 mm sort of swing in uncertainty, which is irritating when you're fractions of a millimeter away from a decision boundary.)
We were referred to a specialist with better equipment. (Better means higher resolution, so there's a better chance the tech is clicking where the margins actually are, which means the math will hopefully be more accurate, etc.) When she measured the same ventricle in the baby's brain 3 weeks later, our measurement had gone from 9.8 to 8, well within the normal range. We also had normal NIPT results for the trisomies, so these two things put us out of the various risk buckets.
I'm sorry your doctor felt the need to scare you with all of the possibilities before performing a followup to get a second measurement. I hope everything goes well for you and your LO at your followup.
OB's actually know very little about the details of fetal anomalies, and because of this, they tend to err on the side of bad news as to protect their butt from something should baby come out with something 'wrong' and you sue them because they didn't tell you. A lot of obstetrical care is based around litigation and legality, which is sad but true.
I had a similar experience with my first. They found a spot on his liver, the MFM at the ultrasound reassured me it was probably nothing and offered a follow up, we went to the follow up, and again the MFM said it was still there but not a big deal and not to worry, it was probably just a variation of normal. THEN I went back to my doctor and she basically did the same as your doctor, scared the mother-living crap out of me and I left there bawling. I ended up reading the report from the MFM on my own, and it was SO reassuring! BUT my doctor had SO little knowledge on the subject, she saw it as an anomaly that needed to be dealt with my specialists and followed closely.
In the end it was nothing, and DS is a healthy, happy 18 month old.
The moral of my story is please see an maternal fetal medicine specialist. It is their job to know everything there is to know about fetal anomalies and can give you the most up to date information and guide you as to what to expect. I really hope your case turns out like mine and it turns out to be nothing!
Going to be a long two weeks!
I have this same issue this pregnancy. I almost did a thread on it until I stumbled across yours. It's almost comforting to know there's another Dec17 mama dealing with this and I'm not totally alone.
I have so many questions and there's so much I don't know yet. I had my anatomy scan @ 22w3d gestation last week. On Friday I received an incoming call from my doctors office, and it was after hours, so I just knew something was up.
It was my doctor and he said that the fluid levels were just slightly above normal. He assured me that he thinks that they will go down on their own. In the mean time, I'm to go in to the Maternal Fetal Medicine clinic on the 17th for a second ultrasound (their ultrasound machines are more high-tech)
I was so bewildered by the call, all I could say was "ok". But now I have so many questions, what does this mean exactly? What were my baby's measurements? Etc Etc.
I have my regular monthly OB appointment tomorrow afternoon and I've written a list. I did some research online and did find another baby forum where many mom's responded with their experiences. It is a few years old but the information was helpful.
https://www.babycenter.com/400_what-is-the-outcome-for-a-baby-whose-brain-fluid-level-measu_10772296_259.bc
TTC #1 since 12/2015
BFP 4/4/17, EDD 12/4/17
Married May 2014
DD born August 2016
Baby #2 due December 2017
DD - 12/28/17
TTC #2 3/2019
BFP 5/2019 || MC - D&C 5/2019
BFP 2/2020 || EDD 10/10/2020
Met: September 2005 Married: October 2008 DS: 09/2014
Me: 36 DH: 41
2 Dogs / 2 Cats
IUI #2 10/2016 BFN
IUI #3 11/2016 BFN
IVF #1 03/2017 - 23 Retrieved / 22 Fertilized / 11 at Day 3 / 1 Beautiful Embryo tf on Day 5 / 7 Frozen on Day 6 - Beta #1 4/5/17: 104 Beta #2 4/7/17 224
Diagnosed : unexplained infertility
6 rounds of IUI and a MC 2/2014, rainbow twins 4/2015
TTC #3 5/2016
Restarted Fertility tx
IUI 2 rounds, baby girl 12/17
** December BMB Siggy Challenge - Animals in Pools **
Me: 31+ H: 32
TTC Since 11/2015
#1 - MMC 6.5 weeks (2/16); #2 - MC due to cystic hygroma at 20 weeks (10/16); #3 CP (2/17); #4 - Due 12.16.17
DX Diminished Ovarian Reserve, Factor V Leiden Mutation, Secondary Infertility
MFI (SA #1Count 11mill, Motility: 18%, Morphology: 1%)
AMH .328 | FSH 13.2
Gavin - 8/27/10
*TW*
Gabriel - 2nd tri loss 5/17/16 Trisomy 18 & 21
Hope - 2nd tri loss 12/7/16 complications from pneumonia