Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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monale123 - 347 days ago.
I would also like to leave a positive message. We were diagnosed at 19 weeks with Mild VM measuring close to 12mm, possible absence of the corpus callosum and talipes on one or both feet (i.e. club feet). We did an MRI at around 23 weeks and the corpus callosum was possibly spotted. We tracked the VM over the pregnancy and by 35 weeks had gone down to just below 10mm. The funny thing is that the talipes was confirmed throughout the pregnancy, but when our beautiful little girl was born 6 months ago she had two perfect feet and absolutely no issues. She has had three scans to date and her ventricles have stayed just under 10mm. She is meeting all her milestones and is just a pleasure, a little angel. To think that we were given the option to terminate and that the diagnosis we were given was so bad at first. Luckily we were treated by a specialist who was very positive throughout and by the time we were 35 weeks he was very reassuring that our baby would be fine. It always hard to give advice when each case is different and you don't know how it will all turn out but I have learnt from this whole experience that doctors don't always have all the answers and some times you have to trust your instinct, but more importantly you have to come to terms of whether you can live with the worst case scenario.

emelc - 349 days ago.
Thank you partyof5now (Sonya). So glad to hear that you son is doing just great. Now I believe that who has hard times when pregnant, those are gonna enjoy their babies even more than other parents. I hope it is our blessings and things will work out just fine..

partyof5now (Sonya) - 350 days ago.
EmelC - your story sounds very similar to our story with my son...his left vent was dialated to 14mm when we were 1st diagnosed at 29 weeks when we were ordered a fetal MRI to get a clear pic, then it went down to 12mm over the next couple weeks of monitoring...level ll ultrasounds & by 35 weeks when we stopped monitoring it was measuring just over 10mm...so just above normal. They did a CT scan when my son was 1 day old & it still meaured slightly enlarged...our neurologist said it shouldnt hinder our son in any way & shouldnt cause any lasting effects, still no explaination for it other than its just the way my son is...makes him who he is I guess but we still pay close attention to him meeting all his milestones as listed...he is now 16mo old & doing wonderful, amazes us everyday & is such a blessing...he 1st stood up at 7mo, walked at 9mo, says 6+ words, signs 4 words in ASL...just a joy to be around & I think our scare while pregnant with him made us appreciate every one of his little smiles all that much more. we saw his neurologist when he was 8mo old & declined another MRI because no further issues had presented themselves but he said he looked perfectly fine & cleared him of any & all issues...I still watch him like a hawk because besides the VM diagnosis he had another more serious diagnosis & I am scared it may pop up one day out of the blue even tho neurologist cleared him of it after his birth...So try to stay possitive, it doesnt sound like your LO has any other issues to compound the VM diagnosis so it sounds like your LO will be just fine...thoughts are with all of you that are going thru this. missbual@gmail.com - congrats on your new LO on the way & so glad to hear your DD Aanaya is doing so good...such a little trooper you have =) It makes me smile to be able to come back on here since my sons birth & see so many positive stories being shared after going thru so much...It is a hard time to go thru & you feel helpless, I know this site helped me so much while I was going thru our scare...so try to stay positive

emelc - 351 days ago.
Hi missbual@gmail.com Do you mean that you had a treatment to cure her? What was that? Or how was it explained to you that vents gone better?

EmelC - 351 days ago.
First i want to thank you all who shared their good outcomes here. Mostly I found the posts about the problem accured, but not a result. I am having the same difficulties right now. When I was 16 weeks pregnant, the left ventricul of my boy seemed enlarged on the ultrasound scan. I had a blood test which was ok. I had a detailed ultrasound scan which seem also ok. Last thing I had an amnio which I am still waiting for the result. My boy's ventricule was 11 to 12,5 mm. If my amnio result is fine (next week i am gonna find out) doctors is gonna watch the ventrucule measurement. I desperately hope everything is gonna be alright.

lin - 353 days ago.
Excited to report that baby #3's vents appear to be normal measurement after my first ultrasound! Baby #1's were enlarged and baby #2's were normal. Nice to have stress free pregnancies after such a terrifying first one! Best wishes to you all.

thinkpink2010 - 359 days ago.
I also wanted to post a note of encouragement. We were told later in our pregnancy (about 35 weeks) that our son had enlarged ventricals. They monitered them and then at 37 weeks they took the baby c-section. Fast forward 6 months, we just had his 2nd MRI yesterday and although his right ventrical is still slightly enlarged, the pediatric neurologist told us this is nothing to worry about that he should develop normally! He is 'talking' and rolling and appears to be a typical 6 month old! I know it is much easier said than done, but try not to stress too much and enjoy your pregnancy! Hang in there ladies!

daisy814 - 361 days ago.
I couldn't agree more with butterfly71. We had the same experience. Our son was diagnosed with mild ventriculomegly in the womb at about 20 weeks. Of course the 1st thing I did was go on the web and got scared at all the information. I was so stressed and felt like it sort of ruined my pregnancy too. The left ventrical was measuring 10-11 mm and stayed that way throughout pregnancy. He was born via c-section in June 2010 and is a healthy, sweet boy. He is now 8 months and is a perfectly normal, curious little baby. He got an MRI done at a children's hospital a few days after he was born to get a better look outside of the womb, but everything was the same. They told us to just monitor him and if we saw any develpmental delays to let them know. At his one year birthday, if there are no problems, they won't even monitor it anymore. So far we have seen no problems. I know how scary it is to be faced with this challenge. I know not all will be blessed with the same outcome, but it may turn out to be fine. I promised myself I would post to others once our baby was born, because I always remember it gave me some peace and hope to see good outcomes among all the scary ones. God bless!

butterfly71 - 362 days ago.
Hello to all - just an update from a former VM Mum, our boy had ventricles of just over 10mm and 11m at our 19 week scan, which resolved one week later to 7mm and 8mm (actually a very confusing situation!!). In later pregnancy they increased to over 9mm, and seemed to stabilise at that. We were told that we still had an increased risk of chromosomal issues or brain damage. Our son was born in December 2010 and is perfect in every way. He is now 11 weeks and if anything, is already showing signs of being very intelligent, social and physically strong. For those of you in a similar position who will go onto to have horrible, stressful pregnancies like I did - I hope this gives you a bit of reassurance that every thing can be alright. I know I hung onto stories like this when I was pregnant, reading up all the time on the internet and trying to find happy outcomes to buoy my spirits. Hugs to all who have to face this issue. Although ours was a mild case, we certainly heard all the dreadful possible outcomes and went the entire pregnancy hoping that things wouldn't get worse. For us, and for most people (particularly if you are having a boy), it turns out to be nothing, so keep that it mind while you are hearing the scary news & imagining the worst. Best wishes to you all having to deal with this, especially those who have severe cases. xx

enya1292 - 371 days ago.
Great news! We saw the perinatologist yesterday, had the sono, and the doctor said the fluid went down again! He didn't talk specifically about vent size, but he uses this ratio that includes vent size to head size. Her head measures 27 weeks (I am 26 weeks 5 days, yesterday). The fluid percentages went down from 58% and 74% (one for each side) to 58% and 56%. He was really pleased, as are we. Still praying and thanking God every day!

eyebaby - 372 days ago.
thanks have added you on my FB. Dr. told me that she's worrying about neuronal migration disorder e.g. lissencephaly etc. but my baby would not be the worst type coz she does have some 'grooves and fissures' seen. Can anyone tell me what it is please? how come they are so worried?

LDMusgrave - 372 days ago.
Eyebaby, would you like to add me on facebook? Lindsey Dewar Musgrave. I can talk to you better there and you can see pics of my baby!

LDMusgrave - 372 days ago.
Eyebaby, my daughter's vents measured 70 mm and 32 mm at birth. Your baby has what I would like to think is mild ventriculomegaly. It could possibly be thought of as moderate? I don't think it's severe at this point. My daughter has been through a lot, but she's doing well, and she's just beautiful!!

eyebaby - 372 days ago.
hi thanks for your reply. I could not resist checking my baby and did a doctor visit today. the ventricular size is about the same. since i'm about 29-30 weeks, they are checking the 'fissures' and grooves. They said the Sylvian fissure is not so prominent although present. So they are suggesting a fetal MRI for me in the next month. otherwise, the head size and other parts and growth is normal. Corpus collosum is present so ACC is out. They said they are worrying about neuronal migration disorder. One of the doctors said 'hope for the best and prepare for the worst'.

partyof5now (Sonya) - 373 days ago.
Hi Eyebaby, sorry you are going thru this. My son just turned 15months old last week & as I think back on his pregnancy, all we went thru & all the things we were told by my docs that we should do (like termination & weekly vent scans) I wish so much that things had been different & that I could have changed some things knowing what I know now...we had every test, fetal MRI, blood test & Amnio plus weekly U/S's to measure vents & 2x's a week non stress tests & in all thoses tests we were continually told his increased vent was unexplainable & nothing we could do till born...it sure put us thru alot...so after blood test came back clear & amnio came back clear we did stop the vent measurements at 34-35 weeks & I declined the constant monitoring visits...I think it stressed us out more going thru these continual tests & vent measurments...we just came to the realization that there wasnt anything they could do till baby was born so why keep tormenting ourselves...my son was growing fine, moving fine & we hoped as you do that the vents didnt go up...so as scared as we were the last few weeks of our pregnancy was a bit more peaceful that it had been because we just decided it didnt matter, we were having our son & whatever needed to be done after he was born we would deal with then...we loved him regardless. I wish you & your baby the best of luck, try not to stress & do what you & your husband want...you can tell your doctors to keep the info to themselves at this point unless something is seriously wrong of course....but I know how you feel...you want to know but then again you dont want to know.

two-on-board - 374 days ago.
Hello Eyebaby, feeling comfortable not having vents measured is only something you can feel in hindsight, I know how you feel as I thought about refusing but just couldnt make myself, in hindsight I wish that I had, but ........ Because medics are offering an intervention it makes you feel as if you are obliged to take it, but it is your choice, I guess what you need to think about is how it will change your view of your pregnancy and your baby. Things are often so different after babies are born and then things are not so important because you have met your baby and it obviously matters, but not as much as it did before. You could always have the growth scan and refuse the ventricular measurement? Are you medics offering you an in-utero MRI scan?

eyebaby - 374 days ago.
hi everyone, i'm new to this forum, i'm so glad that i've found this forum which dragged me out of the depression over the past 8 weeks. i have a baby girl who has ventricular size ~10-11mm at 22 weeks. I was told by one of the OB dr that termination may be a good idea. I had ultrasound at another OB doctor who did amniocentesis for me, everything was fine. I was struggling if I should have terminated my pregnancy but I did not. I am now 29 weeks. I had scan at 24 weeks (ventricular size 12mm) and 26 weeks (ventricular 13 mm). I am so scared that the size will keep going up and at one time I was thinking if it kept going up then there might be really sth wrong with my baby. I feel that I am so understood by reading this site. My husband thinks the baby should be okay and he thinks I am tooooo anxious. Nobody understand my situation better than all of you. I am thinking I should stop checking the size of ventricles till 34 weeks or later. I just want to know if my baby is growing normal in size. What do you guys think? Everytime I had my scan, I would be praying the number did not go up. It's too stressful.

allsubs@gmail.com - 381 days ago.
http://www.facebook.com/#!/group.php?gid=142269222454986 is a group on facebook, recently started for parents experiencing ventriculomegaly diagnoses of their bubbas....

enya1292 - 382 days ago.
Hi everyone, I saw the neurosurgeon today for our first consultation. She said the same thing the Perinatologist said, the vents were large and that she wanted to keep an eye on them. She explained, as he did, that if they got too big that the baby would come early and they would shunt her. It is nice that they are all so consistent. She said there were no other brain abnormalities that she could see on the MRI. So that was good news. She wants to see us again in 5 weeks and also wants to look at the ultrasounds from our Peri. We meet again with him next Thursday. Last time, he had even said that one vent had gone down a little, so we are praying and hoping (and praying) for the best.

salmasmom - 387 days ago.
Hi everyone, long time I haven't being here! My baby girl is 5 months old now and she is doing amazing. Salma had a enlarged ventricle, when she was born she had an MRI done and the doctor told me she has ACC, plus a heart condition and hypertonia I was devasted, I could not understand why. I had ultrasounds and an MRI done when I was pregnant and a corpus callosum have being seen, I and I was wondering where did it go. I had my daughter at beth israel in NJ and and I wasn't satisfied with the results, I went all the way to Philadelphia to Chop and they gave her all the attention she needed, at beth israel I had the feelings they was studing my daughter, she was in the NICU for no reason. Salma has a thin corpus callosum that for the doctors in NJ makes no difference but it makes a difference to me. My baby has a chromosome disorder, she has a deletion in the chromosome 22, that's why she has the heart, brain, kidney abnormally. The hypertonia is from a bleeding she had in the brain earlyer my pregnancy, and because of the deletion she has NF2 ( neurofibromatis- the body growth tumors ). Was very hard on the begining and till now, the doctors told me that she will not walk or talk and even see. Salma is doing AMAZING she faces some challenges but she bit it everything, I look it up for so many types of teraphy and treatments and my little Angel don't give up, she got much better with the hypertonia, she lift her head up she rollss, she moves a lot, her vision is perfect her hearing is very good, she smiles , she loves to play is she behind a little?...maybe but is nothing that someone can tell. Is she mentally affect?...I don't know, and I don't think so but she is very smart and learned everything so far. Ladies please never give up on your babies, I take Salma to therapy 4 days a week plus earlyer Intervension that she has at home, do reaserch on the internet there is a lot of therapy and teatment that is not erlaub in the US but is number 1 in Europe. I will try the voyta therapy suppost to be very good. She has her avaliation from early intervention and she is normal as a baby on her age, I have no words to explain how happy I'm about it. Is not easy to have a child with disabilities but nothing better than love, love heels everything. Last week the doctor looked at her and said: Salma you proved that I was wrong. I changed hospital 2 times till I got what I want. I change doctors so many times, I fight with early Intervension for therapy, in a situation like that you need to be firm and know what you want. Don't believe 100% what the doctors say, because they don't know 100% they based everything by the books. Believe in God and try to be strong, I never tought that I could be that strong, I'm a proud mom and again ladies whatever happend is happen for a reason and that little girl took it out the beautiful side of me, I see the world so different now. I wish all of you the all best sincerelly Najat PS. If someone want to add me on facebook please look for najat costa and you can see Sama's picture and how beautiful and smart she is. We can share some information, that would be nice.

almostmommaof2 - 387 days ago.
I haven't been on here for a long time but wanted to check in and give some hope, because I know it was this site that saved me during my pregnancy. I was told at 20 weeks my daughters vents were 11 and ended up going to 29, and thought she had acc. Her vents stayed at 29 and was born with them measuring that, and after she was born they did an MRI and ruled out acc. At 7 months they did a follow up and her vents were still 29. She is 15 months now and is doing awesome. They told me she would walk talk or hold a pencil. She says about 15 words her favorite is what's that. She is walking and is just an absolute joy. She is a miracle. Feel free to go to my page and see an updated pic of her. Don't ever give up hope, doctors are not always right and now we are getting this is just the way she was meant to be..She just has large vents...Good luck to you all and god bless.

turtlemom - 388 days ago.
It depends on how dialated the vents are. My daughter had a compressed cerebellum because her vents were exteremely dialated. If there is a mild dialation with a small cerebellum, the prognosis would probably be different.

two-on-board - 393 days ago.
As the brain matures, alternative pathways can be formed, so communication of the two hemispheres occurs but can take longer than standard times. Effects can be as little as this. Prognosis with acc can depend on the absence/presence of other brain anomolies and the subsequent effect of these to. However, the infant brain is very plastic and adaptable and there is no telling what outcomes can be predicted. The agony comes from the unknown. Some people can cope with that better than others - X

LDMusgrave - 393 days ago.
My daughter's NS once thought she may have ACC, and the way he explained it is that she may transmit information back and forth between the two brain hemispheres a little more slowly. That's basically all he said about it to me.

two-on-board - 396 days ago.
Enya, I am sure that we will get to talk, but do have hope. At your stage of pregnancy I was given a 70% chance of everything being 'normal' (whatever that is), a 20% chance of mild/moderate learning difficulties and a 10% chance of more severe learning difficulties. Although a parent never wants to be faced with any chances that their child might struggle with things, there is a good chance that all will be fine. One of my son's vents reduced to normal size throughout the last 8 weeks of my pregnancy too, this is a good thing! A follow up MRI scan when he was 8 months old showed that his vents were then unremarkable, no dialation, although this is just a snapshot of that day. ACC holds a great prognosis, and where there are struggles there are great therapies to help people through.