Borderline bilateral ventriculomegaly at 22w - support thread!
- Thread starter Tulip
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Thought Id update since my last scan; the consultant measured and it seems the ventricles are slightly reduced. In the Borderline stage now but to be honest baby was moving quite a bit so as long as they couldnt tell it was increased im happy.
Go back in 2.5 weeks.
I am now consultant led for my delivery- does anyone know what options will be closed to me now; eg can you still use the water birthing pool? tens machine? etc.
Go back in 2.5 weeks.
I am now consultant led for my delivery- does anyone know what options will be closed to me now; eg can you still use the water birthing pool? tens machine? etc.
Tulip
Ruby <i>, Dils, Rowan
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That's good news Nicki 
I think it just depends what facilities are available on the unit, what are the reasons for you being consultamt-led? I think unless they want constant monitoring of baby (in which case you'll be stuck on or beside the bed) on a trace then you should be able to do what you like, be delivered by MWs but docs are only down the corridor if need be. If its just because of the VM I doubt very much they'll have you on a trace - if they do, id be resistant to that as its important to keep moving and not be flat on your back in order.to progress labour.
My CLU has a birth pool but I couldn't get in it as I was so excited my pulse was too fast
I had a TENS clipped to my bra at all times and laboured standing up holding on to the end of the bed. was a right state 
I think it just depends what facilities are available on the unit, what are the reasons for you being consultamt-led? I think unless they want constant monitoring of baby (in which case you'll be stuck on or beside the bed) on a trace then you should be able to do what you like, be delivered by MWs but docs are only down the corridor if need be. If its just because of the VM I doubt very much they'll have you on a trace - if they do, id be resistant to that as its important to keep moving and not be flat on your back in order.to progress labour.My CLU has a birth pool but I couldn't get in it as I was so excited my pulse was too fast
I had a TENS clipped to my bra at all times and laboured standing up holding on to the end of the bed. was a right state First off, thanks to everyone for this thread. My wife and I are 21 weeks into the pregnancy of our first child.
Last week we went into our 20th week office visit which we thought was simply for checking the heartbeat and finding out the gender of our baby. We had no idea that the purpose of the visit was actually to have an ultrasound and 60 pictures to check the development of the baby. Everything checked out fine - it's a boy - until the doctor met with us afterwards and near the end of the visit mentioned that there was one area of "concern". It turned out that the right lateral ventricle of our baby was borderline mild ventriculomegoly at 10mm. We were in shock and asked what this meant. The doctor simply said that this was rare and in one case in two years, it led to "hydrocephalus". That latter word was what stuck in our memory as we were sent home with a promise of a referral to a "high-risk" specialist. Don't these doctors think about the terms they use?
Naturally as soon as we got home, we Googled hydrocephalus and read devastating stories, not knowing that these were the very worst outcomes of ventriculomegaly and very rare. Backtracking for a while we found out what was really affecting our baby.
Three days later after the weekend, we didn't wait for the specialist to contact us, we contacted her office and although they were booked for the whole week, once she heard about our case, a unilateral borderline MVM, she told us to come in same day. They proceeded to use a level II ultrasound to take new scans and measured the left lateral ventricle at 4mm and the right lateral ventricle at 11mm. All soft markers came back normal/negative. No signs of blood (infection) or calcium build up. He weighed 1 lb 1 oz, or about 2.5 weeks ahead of average development.
Our maternal fetal medicine specialist happens to be the top practitioner in her field in our region of Florida for one of the largest health systems. She told us that she wasn't overly concerned at this point because this is more prevalent in boys and everything else about the baby is perfect. There are no other indicators that anything is wrong. She said there is a strong chance things would turn out fine. She said an amniocentesis would provide little of value in this case and that she wants to see us in 4 weeks to check the ventricles' status and assess where we go from there.
I work with a psychiatrist who is married to a neonatologist and he told us that we don't have much to worry about because everything else looks good and its so rare that cases like ours turn out to be chromosomal or other developmental problems later. His job is working with premies and babies born with various complexities.
Reading other accounts from people who have gone through this, I find it interesting that beyond mostly impacting boys, there is also a tendency that our babies are larger and developed further along ahead of schedule. Also it's comforting to see that most cases tend to resolve themselves either by ventricles staying the same, shrinking, or returning to normal between 24-28 weeks. I'm curious whether these particular babies who are growing quickly are simply entering a growth phase during the 20th week timeframe when measurements are first taken, perhaps when the brain is developing, and maybe this explains some of the larger ventricles? There doesn't seem to be much understanding or studies out there that explore what exact role the spinal fluid plays in the baby's brain development. Maybe wishful thinking on our part.
We did read on Kaiser Foundation's literature that of the 4 million babies born every year in the United States, 0.001% or 4,000 babies have mild ventriculomegaly in one or both lateral ventricules. 90% or 3600 babies are born normal and the ventricules stay the same size or return to normal. 400 babies have ventricules that get larger. 4% or 160 babies have chromosomal abnormalities.
Take away fact: In MOST babies with MVM the ventricules stay the same, reduce in size, or even return to normal. MOST babies with MVM and normal test results are born healthy.
We'll report back the outcome of our next visit on 9/24 and how the ventricules are measuring. Obviously we're hoping for the best for our little man.
Best of luck to all of you and thanks for all the information on this thread.
Kevin and Darlene
Last week we went into our 20th week office visit which we thought was simply for checking the heartbeat and finding out the gender of our baby. We had no idea that the purpose of the visit was actually to have an ultrasound and 60 pictures to check the development of the baby. Everything checked out fine - it's a boy - until the doctor met with us afterwards and near the end of the visit mentioned that there was one area of "concern". It turned out that the right lateral ventricle of our baby was borderline mild ventriculomegoly at 10mm. We were in shock and asked what this meant. The doctor simply said that this was rare and in one case in two years, it led to "hydrocephalus". That latter word was what stuck in our memory as we were sent home with a promise of a referral to a "high-risk" specialist. Don't these doctors think about the terms they use?
Naturally as soon as we got home, we Googled hydrocephalus and read devastating stories, not knowing that these were the very worst outcomes of ventriculomegaly and very rare. Backtracking for a while we found out what was really affecting our baby.
Three days later after the weekend, we didn't wait for the specialist to contact us, we contacted her office and although they were booked for the whole week, once she heard about our case, a unilateral borderline MVM, she told us to come in same day. They proceeded to use a level II ultrasound to take new scans and measured the left lateral ventricle at 4mm and the right lateral ventricle at 11mm. All soft markers came back normal/negative. No signs of blood (infection) or calcium build up. He weighed 1 lb 1 oz, or about 2.5 weeks ahead of average development.
Our maternal fetal medicine specialist happens to be the top practitioner in her field in our region of Florida for one of the largest health systems. She told us that she wasn't overly concerned at this point because this is more prevalent in boys and everything else about the baby is perfect. There are no other indicators that anything is wrong. She said there is a strong chance things would turn out fine. She said an amniocentesis would provide little of value in this case and that she wants to see us in 4 weeks to check the ventricles' status and assess where we go from there.
I work with a psychiatrist who is married to a neonatologist and he told us that we don't have much to worry about because everything else looks good and its so rare that cases like ours turn out to be chromosomal or other developmental problems later. His job is working with premies and babies born with various complexities.
Reading other accounts from people who have gone through this, I find it interesting that beyond mostly impacting boys, there is also a tendency that our babies are larger and developed further along ahead of schedule. Also it's comforting to see that most cases tend to resolve themselves either by ventricles staying the same, shrinking, or returning to normal between 24-28 weeks. I'm curious whether these particular babies who are growing quickly are simply entering a growth phase during the 20th week timeframe when measurements are first taken, perhaps when the brain is developing, and maybe this explains some of the larger ventricles? There doesn't seem to be much understanding or studies out there that explore what exact role the spinal fluid plays in the baby's brain development. Maybe wishful thinking on our part.
We did read on Kaiser Foundation's literature that of the 4 million babies born every year in the United States, 0.001% or 4,000 babies have mild ventriculomegaly in one or both lateral ventricules. 90% or 3600 babies are born normal and the ventricules stay the same size or return to normal. 400 babies have ventricules that get larger. 4% or 160 babies have chromosomal abnormalities.
Take away fact: In MOST babies with MVM the ventricules stay the same, reduce in size, or even return to normal. MOST babies with MVM and normal test results are born healthy.
We'll report back the outcome of our next visit on 9/24 and how the ventricules are measuring. Obviously we're hoping for the best for our little man.
Best of luck to all of you and thanks for all the information on this thread.
Kevin and Darlene
Tulip
Ruby <i>, Dils, Rowan
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Congratulations on your little boy Kevin and Darlene, and thanks for those very helpful stats I absolutely agree with your theory that borderline or mild enlargement are in the middle of a growth spurt.
Wishing you the very best of luck for your follow-up.
I absolutely agree with your theory that borderline or mild enlargement are in the middle of a growth spurt.Wishing you the very best of luck for your follow-up.
Our baby girl was born a week back. the 34th week ultrsound scan showed no dilation of the brain. Her APGAR score at birth showed 10/10. She is perfectly normal, started feeding on her own. My elder one needed a lot of prodding n teaching before she took to feeding. If you can recall, I had posted a thread in the month of May.
Thanks for your support
Thanks for your support
Just a quick update. We had our scan 2 weeks ago at 28 weeks and he has definitely reduced from 13mm to 10mm. We have another scan on the 10th October and then another 4 weeks after that. The doctors arent too worried.
Like DarKev our little boys head was measuring at 30 weeks and the rest of his body was measuring at 28 weeks but the doctors didnt seem concerned about it; i assume it all evens out by the time due date arrives.
Only 2 weeks to wait til the next update. Looks promising though
I have been told though that water birth is probably not an option as i will need to constantly be monitored which isnt ideal when im in water. booooo
but TENS machines are ok to use. So thats the plan.
Like DarKev our little boys head was measuring at 30 weeks and the rest of his body was measuring at 28 weeks but the doctors didnt seem concerned about it; i assume it all evens out by the time due date arrives.
Only 2 weeks to wait til the next update. Looks promising though
I have been told though that water birth is probably not an option as i will need to constantly be monitored which isnt ideal when im in water. booooo
but TENS machines are ok to use. So thats the plan.Hi everyone
I wanted to thank you all for your informative thread. I had my 20 week scan today (i am 21+1) and they reported that the posterior ventricle was dilated measuring 12.9mm. I came home from my scan heartbroken and thinking the worse! Couldnt focus on seeing my lovely baby boy. I was on the scanning table for 50mins whilst the sonographer poked my stomach to get the baby moving, as he was not in the best position.
We were also told that she couldnt see the full 4 heart chambers, but used something else to see the outside of the heart. She said that was due to the baby's position and that spine, organs, hands and feet looked fine. My quad blood test at 15 weeks was all fine and classed as low risk!
I am seeing a specialist for another scan on thursday, and im praying that my local hospital has measured wrong. I am a bigger lady so that has impacted this scan as i carry weight on my stomach.
Ill will post how i get on to keep this thread running! xx
I wanted to thank you all for your informative thread. I had my 20 week scan today (i am 21+1) and they reported that the posterior ventricle was dilated measuring 12.9mm. I came home from my scan heartbroken and thinking the worse! Couldnt focus on seeing my lovely baby boy. I was on the scanning table for 50mins whilst the sonographer poked my stomach to get the baby moving, as he was not in the best position.
We were also told that she couldnt see the full 4 heart chambers, but used something else to see the outside of the heart. She said that was due to the baby's position and that spine, organs, hands and feet looked fine. My quad blood test at 15 weeks was all fine and classed as low risk!
I am seeing a specialist for another scan on thursday, and im praying that my local hospital has measured wrong. I am a bigger lady so that has impacted this scan as i carry weight on my stomach.
Ill will post how i get on to keep this thread running! xx
Hey Tulip,
The measurements have stayed the same, around the 11cm mark. So better than when we had the 20 week scan but I think they are going to stay around the borderline mark now.
In the scan they checked the rest of his body and now they are slightly worried about his bowels as he has a prominent loop of poo. So back next week rather than in 3 to have that checked up on..... sooooo many scans. I swear im funding the car park just by myself. £4.50 every time I go..... I didnt budget for this lol. Thats about £70 just gone in car park fees. lol
The measurements have stayed the same, around the 11cm mark. So better than when we had the 20 week scan but I think they are going to stay around the borderline mark now.
In the scan they checked the rest of his body and now they are slightly worried about his bowels as he has a prominent loop of poo. So back next week rather than in 3 to have that checked up on..... sooooo many scans. I swear im funding the car park just by myself. £4.50 every time I go..... I didnt budget for this lol. Thats about £70 just gone in car park fees. lol
Hi everyone
I thought i would update you on my scan today. They done the scan and it turns out i have choroid plexus cysts in the ventricles, which alone they felt wasnt a problem. The initial scan had shown an echogenic spot on the cord insertion. When they looked at that closer it turned out to be a exomphalos, which is basically a tiny bit of the baby's bowel were the cord enters.
Unfortunately that combined with the cysts means a possible abnormality. They recommended the amnio, which i have had today. If the results come back with no abnormality, both conditions should fix themselves and will be fine, but there is a risk of edwards syndrome, as well as downs, and patau.
Not the best news but i feel a lot calmer today, now i know ill get a definite answer. They classed it as 1 in 3 chance of abnormality of one of the above conditions. The amnio wasnt pleasant and im resting up now, and should know by next wed the result. Im hoping my quad test being low risk is a positive sign. Just a pain that they only process the results on working days, and the weekend is in the middle!
So a different diagnosis and not the news i wanted - in a way its the worst outcome in the world or the best (fixable issue). No middle ground! xx
I thought i would update you on my scan today. They done the scan and it turns out i have choroid plexus cysts in the ventricles, which alone they felt wasnt a problem. The initial scan had shown an echogenic spot on the cord insertion. When they looked at that closer it turned out to be a exomphalos, which is basically a tiny bit of the baby's bowel were the cord enters.
Unfortunately that combined with the cysts means a possible abnormality. They recommended the amnio, which i have had today. If the results come back with no abnormality, both conditions should fix themselves and will be fine, but there is a risk of edwards syndrome, as well as downs, and patau.
Not the best news but i feel a lot calmer today, now i know ill get a definite answer. They classed it as 1 in 3 chance of abnormality of one of the above conditions. The amnio wasnt pleasant and im resting up now, and should know by next wed the result. Im hoping my quad test being low risk is a positive sign. Just a pain that they only process the results on working days, and the weekend is in the middle!
So a different diagnosis and not the news i wanted - in a way its the worst outcome in the world or the best (fixable issue). No middle ground! xx
Tulip
Ruby <i>, Dils, Rowan
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Hoping for a good result for you mama, what a stressful day you've had. I don't suppose you got to look at babys hands today? Out sonographer ruled out Edwards straight away because Edwards babies have clenched fists (DS was waving his open hands around at the time) x
I did actually! As this was a different hospital they had a screen for me to see, so i could see everything they were doing, my hubby usually gets to see all of baby via the main sonographer screen, but this time i saw and can clearly remember thinking wow look at his little finger bones, his hands were not clenched at that point as i could see all fingers straight. My hubby says he has seen this on other scans. Do you think that could be a positive in all of this? Thanks so much for replying and your support i really appreciate it xx
stargirl77
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Hello
I am new here after my 28 week scan yesterday. They identified that one of my babys vents were measuring large, but did not give a figure. They have set me up with an appointment with the consultant on Monday. We are very very frightened. On the scanner the vent looked massive and the midwife noticed it straightaway. Any advice on questions to ask the consultant would be good. The vents seemed fine at 21 week scan, is it a greater cause for concern when they are dilated later in pregnancy? Thanks for your stories - they have provided much comfort. I had never heard of this condition until yesterday.
I am new here after my 28 week scan yesterday. They identified that one of my babys vents were measuring large, but did not give a figure. They have set me up with an appointment with the consultant on Monday. We are very very frightened. On the scanner the vent looked massive and the midwife noticed it straightaway. Any advice on questions to ask the consultant would be good. The vents seemed fine at 21 week scan, is it a greater cause for concern when they are dilated later in pregnancy? Thanks for your stories - they have provided much comfort. I had never heard of this condition until yesterday.
Tulip
Ruby <i>, Dils, Rowan
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I did actually! As this was a different hospital they had a screen for me to see, so i could see everything they were doing, my hubby usually gets to see all of baby via the main sonographer screen, but this time i saw and can clearly remember thinking wow look at his little finger bones, his hands were not clenched at that point as i could see all fingers straight. My hubby says he has seen this on other scans. Do you think that could be a positive in all of this? Thanks so much for replying and your support i really appreciate it xx
Ok I've done some digging around and while nowhere says hands are ALWAYS clenched in T18, the consensus is that they are 'typically' clenched, and with the index and baby finger each overlapping the finger beside them. I would hope it's unlikely to be Edwards on this basis (though of course I am no professional). BUT most places don't mention cord insertion problems as a marker, but Wiki does. It also says the CP cysts aren't necessarily a problem themselves but could point to an underlying syndrome. Other T18 symptoms are a small head but prominent back of skull, small mouth and big toes that stick upwards xx
Tulip
Ruby <i>, Dils, Rowan
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Welcome over Stargirl. Of course you're afraid, what a shock 
its entirely possible that baby is in the middle of a growth spurt and the vents/brain are slightly ahead of the body. It might be that you've had an infection and its had a temporary effect on baby's fluid; it may be that baby has a blockage causing fluid to build up. It's HELL waiting to see the consultant when you have a whole weekend to Google potential outcomes Please be assured that chances are it isn't as huge as you fear (though I know it just looks like a gaping hole in LO's brain when you first it), that it will likely remain in stable or correct itself, and that if it DOES progress, the range of potential outcomes varies hugely. It's generally not a death sentence for your precious baby.
Best of luck with the doctor, and please let us know how it goes xx
its entirely possible that baby is in the middle of a growth spurt and the vents/brain are slightly ahead of the body. It might be that you've had an infection and its had a temporary effect on baby's fluid; it may be that baby has a blockage causing fluid to build up. It's HELL waiting to see the consultant when you have a whole weekend to Google potential outcomes
Please be assured that chances are it isn't as huge as you fear (though I know it just looks like a gaping hole in LO's brain when you first it), that it will likely remain in stable or correct itself, and that if it DOES progress, the range of potential outcomes varies hugely. It's generally not a death sentence for your precious baby. Best of luck with the doctor, and please let us know how it goes xx
stargirl77
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Thanks so much Tulip for your kind words and advice. This is going to be a long weekend. I just cant wait until Monday to find out more. Yes, a gaping hole is exactly what it looked like on the scanner. I don't know how many mms it was though. I am also worrying the midwives knew more than they were letting on and torturing myself trying to remember bits of the conversation. I will post back on Monday.It has been lovely reading these stories and i am so glad to have found this site.
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