Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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LDMusgrave - 13 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 - 13 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 - 14 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 - 14 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 - 15 days ago.
Thanks amy73! Will do! :)

kjh6b@hscmail.mcc.virginia.edu - 15 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 - 15 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 - 15 days ago.
Is it just me or is the article on this page not showing up?

katieandiggy@tiscali.co.uk - 15 days ago.
Kjh- my consultant said exactly that! Who knows how many people have enlarged vents, plus he said we all have different measurements, some women are 6ft tall, no why that isn't a problem it is out of the 'normal' range for a woman, same with the vents, just because they larger than 'normal' doesn't always mean a problem! Some people have one foot bigger than the other, one hand slightly larger, we aren't all completely symmetrical. I've read LOTS on VM, I sit most days frantically googling the topic. As you say, most studies are nit followed up properly but I have read LOTS if studies that state that if VM is an isolated finding the prognosis is very good, in fact these children in one particular study developed completely normal. I think it's when there are other abnormalities that they can be some delays. I will stay with this board an report my sons development if it only helps other parents on what to expect. P.s if I hadn't gave had a scan at 33 weeks which isn't routine, I wouldn't have even known about the vent and I guess my son would have either grown completely normal meeting milestones or I would have found out at a later stage had he not met milestones. I'm not sure what I would have preferred, as my life feels consumed with fear and worry for hi , the slightest thing and I'm worrying its related to his vent. I took him to the doctors with colic and found myself asking the doctor could this be related to his VM, think the doctor thought I was mad lol

kjh6b@hscmail.mcc.virginia.edu - 15 days ago.
katieanddiggy and amy73 - I'm in the US. I have been to 3 separate practices (my doc that will be delivering the baby, the doc that does my ultrasounds, and a childrens hospital for the fetal MRI) and none have mentioned this test. Definitely going to ask about it at my ultrasound this Friday. Thanks so much for the info on the TORCH screening. As far as after birth care I was told the same care would be provided that katieanddiggy have received - an ultrasound at 4 weeks - followed by monitoring of the baby's head size and milestones. A wait and see which at times I'm ok with and at other times I drive myself crazy with the need to get answers now. I've had a really hard time finding parents that post on the outcome of their children after the initial in-utero findings of vm. Even the research doesn't seem to go far past the toddler age although most I've seen do hypothesize that these children will have different outcomes than 'normal' children without vm. What does that even mean? So wish there was more info out there for us vm parents stretching into at least adolescence. One piece of interesting info my neurologist gave me was that if we didn't have these ultrasound and MRI findings there would be no way to tell my baby apart from a 'normal' baby. Wondering how many of us are walking around with enlarged ventricles...

katieandiggy@tiscali.co.uk - 15 days ago.
Amy- my son had an ultrasound at birth which confirmed the vent was still enlarged. He has his head measured weekly at the baby clinic and a follow up ultrasound at 4 weeks but I couldn't get an appointment until 6 weeks. Basically they just watch the vent make sure it doesn't increase, as you said if it increased too big I guess they would drain it with some kind of shunt. It's just a case of careful monitoring of the vent and the baby reaching milestones.

amy73 - 15 days ago.
mylsdeniz, I'm sorry that today is such a painful one. I haven't really got any words of wisdom or can say anything that can soothe the pain, but thinking of you. With regard to the TORCH blood screening (in the UK anyway) as Katie says, T = Toxoplasmosis, O = Other Infections i.e Parvovirus (slapped cheek) and others, R = Rubella, C = Cytomegalovirus and H for Herpes Simplex infection. This will tell whether you have been infected by any of these during your pregnancy. Previous infection prior to pregnancy will show up as having older antibodies, which wont have had an effect the pregnancy. It seems though that many womens results come back as negative, as mine did, so whatever is causing the increased fluid in the vents, it wasn't due to any of the above. What is the general course of action after birth? If the baby continues to have larger vents, but not large enough to shunt, is it just left? I'd be interested to know what advice anyone has had after birth.

mylsdeniz - 15 days ago.
It was 7 months ago on my first visit to my midwife after I found out that I was pregnant.. My midwife asked me my last period and calculate my due date, which was 30.01.2012. Since than I was just waiting for that big amazing full of hope day until I found out that my baby has couple of abnormals ( water on the brain, absent cavum septum, absent stomach and club foot ) I kept my pregnancy until week 31 and I had to make a decision which was too hard for me. I although terminated my pregnancy, I never stopped visiting that forum, I had the same experiences and same feeling with the mums here. I just wanted to share my feelings with all of you. If I did not terminate my pregnancy , today I was going to give a birth to a baby boy , whose name is Deniz. ~ Mum loves you and missing you so much XXX

katieandiggy@tiscali.co.uk - 15 days ago.
Tim, sorry to hear the vents did not go down but good news they appear stable. I felt exactly the same when my son had his U/S after birth. I hoped that the vent would have been normal. My don is 5 weeks now, he's absolutely brilliant, cooing all the time, starting to smile. Who knows what the future holds but we love him no matter what.

timmpierce@gmail.com - 15 days ago.
An Ultrasound was just performed on our 3 day old son. I must admit I was disappointed when they said the ventricles were more or less the same - 11mm and 15mm. I was really hoping that something miraculous would happen during delivery to reduce the dilation, alas not. The next stage is to watch his development over the next few years, to watch for delays. I'm totally committed to giving Magnus (tis his name) absolutely everything he needs to reach his full potential, so our focus now is to be caring, loving parents on whom he can rely and trust. So I guess I'll probably be posting on here again in the future.

katieandiggy@tiscali.co.uk - 15 days ago.
That seems to be three of us, all with boys, all with heads around the 97th centile, all with one ventricle measuring mildly enlarged.

katieandiggy@tiscali.co.uk - 15 days ago.
Kjh6b- TORCH is just a blood test for Toxoplasmosis, Rubella, CMV and Herpes Simplex. I think CMV is one of the most common infections in newborns. There are other infections like Parvovirus but you are not tested as standard. Are you in the uk?

kjh6b@hscmail.mcc.virginia.edu - 15 days ago.
Thank you Laura for your reminder on what this forum is about. Reading your post was like a breath of fresh air. I just want to apologize to all other members for my distracting and inappropriate comments from earlier in the week. It will NOT happen again. Thank you all for sharing your stories - they have given me a great deal of comfort throughout this pregnancy. amy73 - At my 30 week fetal MRI my sons head was measuring 3 weeks ahead with his left lateral ventricle measuring 11.9mm. Since both of my girls heads were in the 97th percentile from infancy on - the docs told me they think his head size is familial and not related to his enlarged ventricle. I have another ultrasound this Friday (33 weeks). What exactly is a TORCH test? I have had docs mention infections as a possible cause of the ventriculomegaly, but there has been no mention of actually testing for them...

amy73 - 16 days ago.
Thanks for that Katie, that has helped put my mind at rest. I think its so easy to start getting paranoid about everything little thing and seeing everything as a possible problem! Also thankyou Laura for your timely reminder - things were getting abit personal and attacking between certain ones and making uncomfortable reading which was having a huge discouraging effect. This should be a place to come for comfort and reassurance not witnessing personal attacking comments.

Laura Ward - 16 days ago.
All Members: Please remember that this is a forum for asking questions, receiving advice and making friends with a similar interest, situation or common goal. The site has very strict rules regarding controversial topics, including abortion. A general question regarding abortion or termination of a pregnancy is usually ok, as long as it does not become heated. Please remember that each of you have a reason for being on this forum and while all of the reasons may not be identical, most of you are very worried and stressed for your baby. Be respectful and mindful to the needs of other members, as these are your friends and sources of support. We strive to maintain a friendly and welcoming environment for all members, both old and new. Thank you for being cooperative and helping us maintain that! If you have questions or concerns, please write to me on my personal page.

katieandiggy@tiscali.co.uk - 16 days ago.
I just checked my 28 week scan measurements: HC was 283.1mm and BPD 89.1mm. A big ol head!

katieandiggy@tiscali.co.uk - 16 days ago.
Amy- my sons head was 4 weeks ahead from 20 weeks. His body caught up at about 35 weeks. By 37 weeks all his measurements were 3-4 weeks ahead. His BPD (width of head) was 6 weeks ahead!!! This seems to be a bit of a trend as I've spoken to ladies on other sides with boys particularly that have large heads and large vents. ( not large enough to be enlarging the head) My sons head Is now on the 91st centile and his weight is just below.

amy73 - 16 days ago.
We had another scan this Friday (28wks) this time with a female consultant. What a difference! She went out of her way to explain everything and has really made us feel so different and far more optimistic. The ventricles are stable and now measuring more evenly - measurements around 11.9mm. TORCH results came back negative for Toxo and CMV and Parvo, which she says are the most common causes for enlarged ventricles. She also said the baby is measuring large everywhere, particularly the head so is less concerned about the ventricle measurements - doesn't think this is as a results of ventricle size and also that last two babies were on the large size. The head circumference is 282.5mm which is about 3 wks ahead. Has anyone else had this? She kept reminding us the vent measurements fall into the mild catagory and nearly all turn out to be completely normal. I now feel I can actually start to enjoy the rest of the pregnancy even though there will still be times of feeling uncertain. Next scan in 4 weeks. Congratulations Timm on the safe arrival of your son. Things sound really positive, so happy for you.

timmpierce@gmail.com - 16 days ago.
Thanks Katie! Yes our son is incredibly hungry/greedy too ....hopefully for vent-reducing fuel :-)

katieandiggy@tiscali.co.uk - 17 days ago.
Great news Tim, a good healthy weight too. My son is now 5 weeks old, he's doing great, very alert, great control with his head already, greedy lol. We are having a re-scan in 2 weeks. Please keep me updated, I'm interested to know if the vents go down, my son was scanned 8 hrs after birth his vent was still enlarged, but mildly.