Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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two-on-board - 19 hours ago.
You can see the CC on ultrasound once babies are born x

kjh6b@hscmail.mcc.virginia.edu - 1 days ago.
To all interested in cord blood banking - Cord Blood Registry (CBR) has a 'Designated Treatment Program'. Those with a prenatal diagnosis that meet their requirements and are approved by CBR pay only $150 total for the collection and storage of both cord blood and tissue for 5 years. The blood and tissue is available to your baby for treatment of any condition related to their prenatal diagnosis within these 5 years. If needed for treatment of another condition - or for another child before the 5 years is up you can pay the normal fees and have the blood released to you. Same goes for the end of the 5 year period. I just received a call today that I was approved with a diagnosis of mild fetal ventriculomegaly. Just so you know I did have outside factors. I broke my wrist at 22 weeks bad enough to require surgery which may or may not have contributed to my sons ventriculomegaly. I don't know if this contributed to my approval with CBR or not. But if you are interested in cord blood banking I would encourage you to contact CBR and ask about the program. I didn't think we would be approved, but as the CBR rep told me - it's worth a try. He was right! For those of you outside of the US I know they do offer international banking - don't know how this affects the designated treatment program if at all. Here is the link for more info from CBR... http://www.cordblood.com/infokit/referral.asp?contactid=1-5TVBD1 amy73 - I'm pretty sure your baby had vents the same size as mine? 11.9mm - although my sons is unilateral. When we went for the fetal MRI the neurologist told me at this point there was no reason to change our birth plan, to expect a c-section, or to expect the baby needing any type of extra care at birth (beyond the ultrasound at 4 weeks and monitoring of head size and developmental milestones). I would still check with your doc on your birth plan - just wanted to let you know what I was told since we have pretty similar measurements. katie - I'm so sorry to hear you're going thru so much worry with your little one right now. Please keep us updated on his status. :(

turtlemom - 1 days ago.
And, I'm not sure if they can see the CC by US. I would want a MRI to see all the structures in the brain it I were you. Our last CT was $8000 US before the insurance discount. It was very in depth but even a CT was expensive. I can't remember how much the MRI was. It's crazy how much this stuff costs.

turtlemom - 1 days ago.
An MRI wouldn't show seizure activity, just the EEG. Honestly, if it was a seizure, it was probably febrile (associated with fever) and may not show up on the EEG. Unless it is easy to get the EEG, you nay want to just wait and see if you notice any other unusual behavior. You tube has a lot of videos of different types of seizures. I really hope you are not walking this path.

katieandiggy@tiscali.co.uk - 2 days ago.
Thanks Turtlemom I will mention this to my consultant on Monday. I have a lost of questions to ask. He has still not even suggested an MRI. I thought that would have been an automatic thing. While I was at the hospital I asked about my consultant and apparently he has a clinic in London and is a very experienced doctor so I guess I should trust his judgement. I know MRI is obviously the creme da la creme of imaging but would major abnormalities of the brain show up on a level2 ultrasound? He did the scan for a good 45 minutes-1 hour through the fontanelle and said the brain looked normal, I mean can he see the corpus collosum and things like that on an ultrasound?

turtlemom - 2 days ago.
Katie, I'm not sure how easy it is to get an EEG in the UK. Even here it may take weeks depending on your doctor. There is a type of seizure disorder associated with fevers. The bad news is I'm not sure if this one would come up on an EEG if your baby isn't actively having one at the time. There is another type (absence seizures) where they just stare off. This type of seizure does have a specific brain pattern that does (should) show on an EEG even if the patient actively seizing at the time. Hopefully this was an isolated incident.

amy73 - 2 days ago.
Kjh, that sounds great news! At least the head being bigger in size means that nothing is getting squished inside and anyway, if the head circumference is large then surely a vent measuring 11mm is nothing! Both my two previous children were big, my daughter was 9lb 10oz so who knows what size this one is going to be? YIKES! We have our next scan a week next Friday when I'll be 32 weeks, so will be interesting to see how large he has got by then. I'm hoping that the vent thing wont effect me having a water birth. It's what I had with my last two and wouldn't want to do it any other way. Does anyone know whether it would effect the type of birth we have?

katieandiggy@tiscali.co.uk - 2 days ago.
Hi everyone I'm looking for some more advice. I've had a hellish 24 hours. Basically I woke up at 4 am on Friday morning, the baby was in bed with me, he felt a little warm to touch so I got him up and gave him a bottle and some calpol (Tylenol) he went back to sleep ok. When I woke up around 7 am he was uncovered I noticed he looked pale especially his hands. I had a doctors appointment anyway as he had some exczma so I had the doctor look him over, his temp was 37 which is normal for him, his ears, throat and chest were clear. We went home and he had his bottle and slept for a bit. He woke up a bit later and I noticed he was groaning a lot like he was in pain. He had another 6 oz of milk. As the day went on I noticed he was sleeping more and more he became quite lethargic, he was groaning quite a lot even in his sleep. He passed some wind but continued to groan now and then. By 4pm I was worried about him ad he had slept most of the day, and when he did wake up his face was all screwed up like he was in pain and he groaned. We went to a and e (Er) and they hooked him up to a heart rate machine, his head rate was perfect as was his oxygen saturation, he was very sleepy and when he did wake he was very distant, he continued to feed well though. No vomiting or dioreah. We were referred to a pedi doctor due to his vent as the a and e doctor did not want to take any chances. He was examined again, I think the pedi was more conceded about an infection I.e meningitis. He ordered bloods to be done which I can tell you woke him up from his sleep like you wouldn't believe! The pedi also really squished his tummy and he let out a fair amount of wind. He was no longer groaning at this point but still very sleepy. He had another 6oz bottle at 10pm. All the bloods came back completely normal, all of his observations, temp, heart rate, respirations were all completely stable. The pedi felt the fontanelle and it was completely soft and he said he had no worries about the head as he would have expected vomiting and a raised fontanelle if there was any increased pressure. (we are due for an US on Monday anyway) We were told we could stay in for observation if we wished but the sister advised us to go as the ward was full of Coughs colds flu etc and she said he would end up catching something. So we were discharged. Fast forward 12 hours after a settled night with 1 feeding, he is awake and alert, still feeding fine. I feel today he is not making very much eye contact with me, he does appear to be looking around the room but just won't focus on me very much, normally when he has his bottle he always stares at me but today he's looking in my direction but don't seem to be focussing on me. Sorry for the long long post, basically my concern is that he may have had some kind of seizure?? And the sleepiness was the aftermath of it. I did not notice him behaving strange at all, no twitches or stiffness but I am not looking at him 24 hours per day so could he have had one and I not noticed? Would he have still woke up to feed? Would his vitals all be stable? Could him not focusing on me be related to yesterday? He has been awake for a couple of hours now he's making noise, kicking his legs, moving arms all ok. I hope somebody with experience of seizures can let me know if anything sounds familiar.

LDMusgrave - 2 days ago.
kjh, that must mean there's lots and lots of flourishing, beautiful brain tissue in that big noggin with such tiny ventricles.

kjh6b@hscmail.mcc.virginia.edu - 3 days ago.
Hoping for positive results for you on Monday Katie! amy73 - My sons vent measurements did NOT increase. In fact the measurement even went down a little from 11.9mm to 11mm. I know this could just be human error as far as where they're clicking on the screen, but it sure was WONDERFUL to hear that number. His head size is now 5 weeks ahead, but they're still saying they don't think it is at all related to his enlarged vent. They think he's just a big baby (he's 5lbs 13ozs already at 33 weeks - they said I'm looking at another 9 pounder) with a larger than average head size due to genetics. He was 2 weeks ahead at 29 weeks - 3 weeks ahead at 30 weeks - and now 5 weeks ahead at 33 weeks. Kind of worried that it's enlarging that quickly, but then again not too awful much because both of my girls were big babies with big ol' nuggets. :)

amy73 - 3 days ago.
Hope all goes well with ultrasound on Monday Katie - things sounding very positive so far! I was also wondering Kjh how things went with you on your last ultrasound? Hoping all is well.

katieandiggy@tiscali.co.uk - 3 days ago.
My son is now 7 weeks ok'd, wow time flys! He is doing great, he's just started smiling and cooing, it's so sweet. He is going to the hospital on Monday for his head ultrasound, I'm really nervous, dreading it. Just hope at worst the vent hasn't increased. I will update on Monday. Blessings to you all.

turtlemom - 5 days ago.
What a wonderful story, Mommy2e! Thank you so much for coming back to update!! Many continued blessings to you and your boy!

Mommy2E - 6 days ago.
LDMusgrave, it boggles me too which is why I am so glad I found this site...the support and reassurance here from moms and dads who have been there, are truly inspirational.

LDMusgrave - 6 days ago.
Mommy2E, that is amazing news! Truthfully and thankfully, your result is the majority result when it comes to isolated mild ventriculomegaly. Doctors often really like to weigh down hard on parents over mild cases and it really boggles me! I am so glad you have a happy, healthy baby boy!

Mommy2E - 7 days ago.
Hi all, Just wanted to post an update as many of the members updates are what kept us going throughout our pregnancy. We were diagnosed with mild vent at our 20week us. From there we went for lots of followup us and an MRI which all showed slightly enlarged vents (anywhere from 10 -15 mm). We gave birth to a beautiful baby boy 2weeks early and he is perfect in every way! The pediatrician at birth referred us for an ultrasound 2 days after birth. After agonizing about the results, we were thrilled to hear that the ultrasound was completely normal and no further follow-up will be required (just well baby check-ups). What a relieving feeling after so many months of turmoil and worry. DS is now 7 months and is meeting every milestone, has his own little personality and a smile that would melt your heart. Just wanted to share our story in hopes that it gives someone a little fuel to keeps going, as I know this board helped us get through our situation many times.

turtlemom - 11 days ago.
As for the why's and how's, I haven't a clue. But, I have seen a good number of mild vm situations resolve in the 3rd trimester. I also have a little theory about the group that has newborns with 11-12mm measurements now. If 11mm was slightly enlarged when your baby was only 18 weeks GA, wouldn't that mean, as it grew, it would be okay to have larger vents? I never understood why you were supposed to have 6-8mm vents even though your head was 5x the size??? Anyway, it has always made me scratch my head and totally make me want to have a CT scan to see if I too have enlarged vents. If you wikipedia Hydrocephalus you will come across an example of a guy (midway down the page) that walked around for 40 years that never knew he had enlarged vents. I think that modern technology is a blessing and a curse.

LDMusgrave - 11 days ago.
In my personal opinion vents are measured differently by different people. It all depends on where they click the mouse across the ventricles to measure. In cases where ventricles are measuring 11-12 mm, I think it could also be related to the person measuring and the equipment. The important thing is to look at how the baby is doing and stop obsessing over the scans. That's what I had to do with my daughter, because trust me, if you saw her scans, you would not think of a baby who has accomplished the amount of milestones as she has thus far.

timmpierce@gmail.com - 11 days ago.
Just a theory - there seem to be quite a few cases of VM being resolved or semi-resolved at birth. Might this be down the compression of the skull that takes place during a vaginal delivery? Maybe those vents are kind of 'squeezed shut' in some cases?

CarlosCol - 12 days ago.
I want to share with all my experience and thank all who shared experiences in this forum which have always been a great encouragement to me. At 28 weeks Pablo was diagnosed with ventriculomegaly of 12 mm in the left ventricle, we continue to make weekly monitoring noticing an increase to 14 mm at 37 weeks. At 38 weeks born Paul and an ultrasound transfontanelar was made noting ventricles of normal size and a completely normal baby. Currently the baby is 7 weeks, is growing normally and . When he was a month old we conducted a RMI noticed a small cyst in pineal gland, the neurologist tells us that there is no problem with this cyst. If anyone has any experience with cysts of the pineal gland would be very useful for me. Many full tranquility and faith in God that everything will be fine. Sorry for My english.

bailey1 - 12 days ago.
Hi everyone-- I was on this board about 3 years ago when we were going through the crazy VM diagnosis, and I try to write my story at least twice a year since then to help the new ppl :) so here goes (abridged version)... my son's VM was found early at 15 weeks, and was already considered 'mild-moderate.' I was then sent off to a million different doctors and tests (MRI, fetal echo, TORCH, amnio, ultrasounds every few weeks, and NST's every week towards the end of my pregnancy). Thank Gd, all the tests came back normal besides for the enlarged vents. The measurements fluctauted somewhat each time, but ranged from 11.2mm (all the way at the end) to 19mm (around 23 weeks). The pediatric neurosurgeon that we met with told us our son had hydrocephalus and would 100% need a shunt at birth. The entire time, I was confused because although all the doctors told us it was hydro, my son's HC always measured exactly on time. Also, the vents weren't going up, up, up with each scan- sometimes they were higher and sometimes lower- which I thought was probably a result of different techs scanning me- but the surgeon said was based on how much water I drank that day (????) Anyway, we went through A LOT of anxiety, google searches, tears, etc. Almost all of the different doctors we met with advised termination and didn't really give us any hope. I actually felt that the women on this board knew more than the doctors. The worst part was the constant 'we'll have to wait and see what happens when he's born' -- but the truth is, it was so true. The second my son was born, the doctor was all of the sudden singing a different tune. She said he does not need to go to the NICU and would not require a shunt the next day. We had an u/s done a few days later, which still showed 'moderately' enlarged vents- but it seems after the baby is born, they don't care about the measurements anymore- only the head size. We had one more u/s abt a month later, and the vents were the same, so we decided to stop going for u/s unless we saw signs of something being wrong (vomitting, bulging soft spot, sunsetting eyes). We had a few extra head circumference measurement appts with our pediatrician- but once he saw that his head wasn't 'jumping drastically,' we went on the normal pediatrician schedule. We thank Gd every day for our positive outcome. Today, my son is a totally 'typical' toddler (beh). For those of you whose children have already arrived- don't stress about the vents too much. If your child looks 'normal,' and isn't showing signs of distress, he/she probably just has naturally bigger vents which are not affecting anything. If anyone ever has any questions or whatever, please feel free to message me anytime. good luck to everyone!

kjh6b@hscmail.mcc.virginia.edu - 13 days ago.
Thanks amy73! Will do! :)

kjh6b@hscmail.mcc.virginia.edu - 13 days ago.
kandd - Me TOO on the obsessive googling! I do go back and forth though. Sometimes I calm myself down for a week or so reminding myself it is 'only' isolated mild fetal ventriculomegaly (unilateral) and his chances for a good outcome are well over 90%. Then I start thinking that his right vent measures 6mm and his left is almost TWICE that at 11.9mm. Obviously something happened. Obviously something had to be affected...and back to google I go. The geneticist made sure to remind me that every child is different as far as milestones go and that I should try to keep that in mind once he gets here. I see myself being the same way you are - thinking everything is related to his enlarged ventricle. I think I will feel much better though once I can just hold the little munchkin in my arms. Thanks for your follow up posts! It makes me feel so much better reading about how the little ones are doing after birth.

amy73 - 13 days ago.
Katie and Kjh - my consultant too said exactly the same thing about all the people walking around with enlarged vents, he said maybe its something that runs in our families. They only started doing these measurements in the last 8 years or so. At least they're all saying the same things! It would be so useful if we all keep updating after birth as this seems to be the area that is lacking in information. All the best for your ultrasound on Friday Kjh, look forward to hearing your update!

LDMusgrave - 13 days ago.
Is it just me or is the article on this page not showing up?