Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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croberts - 32 days ago.
Hi Kjh, so pleased to hear all went well for you with the MRI, you have given me great hope as your little one's situation sounds very similar to ours. The doc at the MRI also said it was the slight damage or lack of development on one side that was causing one ventricle to enlarge but unfortunately he was not able to be a specific as your neurologist. We are back monday so hopefully we will have a better idea of our situation then. The doc we saw at MRI did mention it was likely to be damage caused by infection, i had bloods done and also get results of these on monday. Did you have any similar tests and was infection mentioned as a possible cause?

kjh6b@hscmail.mcc.virginia.edu - 33 days ago.
Just wanted to give everybody an update on my MRI results. Thankfully, there were no other abnormalities found. At this point it is of course still a 'wait and see' situation, however we left with some very specific answers we were not expecting that eased our minds tremendously. Per the neurologist the left ventricle is enlarged (my doc mistakingly told us the right) and this could indicate either an increase of fluid in this area OR a loss of brain tissue. If there is damage the area that is affected (the back portion of the left lateral ventricle) is the area of the brain that controls muscle tone. So if my son does have any issues because of this it will be with the muscle tone in his right leg. This seems so minor compared to the vast possibilities of impairment my son could be facing. My husband and I left on cloud 9. I am so happy for my son and can't wait to meet the little munchkin. I was also told that it was obvious that something occurred in this area that caused the ventricle to enlarge, however there was no indication that it was an active problem and the ventricle is expected to remain at it's current size of 11.9mm. She even advised me if there are problems with the muscle tone in his right leg that they would surface around the age of 6-9 months. I still can't believe the amount of specificity I left with. We were originally debating holding off on the MRI - SO glad we didn't now.

katieandiggy@tiscali.co.uk - 34 days ago.
LDMusgrave- stories like yours and Turtlemoms gives us all great hope! Cjengo- I have a few questions if you don't mind, i have read lots of Judes story. I was wondering if you noticed anything about Jude in those first 3 months that didn't seem right? Any strange movements of limbs? Poor feeding/growth? My son is 2 weeks now and I'm constantly looking at him wondering if everything is ok.

LDMusgrave - 34 days ago.
And I am happy to report, that since August 24, 2010..... I have a beautiful, happy, healthy, shunted 13 month old daughter. :))

LDMusgrave - 34 days ago.
I was looking through some old posts on my blog and I found the very first post that I ever made on this board. I thought I would share: August 24, 2010 (This was four days after diagnosis.) My husband and I are 21 weeks pregnant with our second child. We were ecstatic to learn that we were having a girl four days ago. About 20 minutes after leaving the ultrasound room, we were pulled aside and told by a doctor that there were some concerns about the baby and that we needed to go have a level 2 ultrasound done. There the doctor said that she was 90% sure our daughter has what she wrote down as 'massive ventriculomegaly.' I could see something flapping on the monitor, and she told me it was the choroid plexus hanging down into the fluid filled around. She told me that I had an option to terminate the pregnancy. I declined. I believe it is only God's decision to take her out of this world. I agreed to an amniocentesis after speaking with a genetic counselor. She mentioned absolutely nothing about the measurements of ventricles, nor did I ever hear the word 'hydrocephalus' come out of her mouth. After doing some research, I called her back that night and wanted to know very badly the measurements of the ventricles. She told me the left was 23mm and she said the right was somewhere around the same. I have a regular OB appointment on Sept. 3. On Sept. 7 I am being told to have an in depth ultrasound of her heart done, to make sure everything is fine there. They said she looked fine everywhere else, but often when there's a problem with the brain, there is also a problem with the heart. So they want this done to make sure everything looks normal. On Sept. 21 I am having an ultrasound with a specialist. My husband and I, and most of my family, are completely devastated by this news. My questions right now are,.. is her case comparable to these babies who turn out to be happy children? What is her chance of survival? I am feeling so lost, in such despair.

timmpierce@gmail.com - 34 days ago.
Very interesting discussion! Two of our doctors both agree the reason our son's right ventricle is large could simply be a narrowed passage draining the fluid (left ventricle is now normal size). But it's probably just an educated guess as the scientific knowledge on this condition is scant to say the least.

cjengo - 34 days ago.
Jude had scans every 2 weeks from 19 weeks in utero on. They assured me the scans had no side effects. Also, I read someone state 'wait and see'. That was our whole diagnosis and still is. It's frustrating but I found when it comes to the brain that's all they can say.

amy73 - 34 days ago.
Hi Laila, I found the bit that the neurologist said about the possibility of chemical or radiation being a contributing factor to enlarged vents. Something I've been looking into lately is the possibility of leaking mercury from amalgam fillings. Has anyone else looked into the dangers from leaking vapour from these fillings? It really is quite scary how dangerous they can be, especially to a developing fetus. I cracked a back tooth about 3/4 months ago crunching on some pork crackling which exposed quite a large chunk of filling which has been the same since then due to the white temporary fillings not staying in place. I'm wondering could have had any bearing?? I'm sure we all keep trying to rack our brains to try and understand what could have caused this and could it have been something we could have changed. I'm sure though it's just one of those things that would have happened no matter what.

samanthajane107 - 34 days ago.
Hi Katie, Got to see consultant next week to find out more about what to expect for development. Doctor who did MRI was pretty vague about possible outcomes but mentioned seizures, epilepsy, visual impairment & problems with one side of body all as possibilities. Have terrible feeling that no-one will really be able to say for sure & will be a case of wait & see. No idea what infection get blood results next week also but mentioned TORCH as possibles. Kjh, i also had some bleeding very early on but not as severe, about 5.5 weeks and then spotting couple more times in first trimester leading to an early scan at 8 weeks but all seemed fine. I also had bought of sickness bug that was going round office at end of first trimester so also wondering if that could have been it although have read that most of time mother doesn't even realise has had an infection that has been passed on. My doctor told me no proof that US or MRI have any harmful effects on baby so I am sure your baby won't be affected by the imaging you have had!

kjh6b@hscmail.mcc.virginia.edu - 34 days ago.
Yet another thought - xrays! This baby has been exposed to so many imaging tests compared to my first 2 children. I have already had an extra ultrasound - tomorrow I go for an MRI and a 3rd ultrasound - then I have a 4th ultrasound with my regular doc scheduled for 2/3 to monitor his ventricle size. Not to mention the xray I had to have in the ER when I broke my wrist and the additional post op xrays. They skipped the 1 week follow up xray at my request, but my 6 week follow up is this friday and I'm due for another xray then. I did make them double shield my belly and I know the images were just of my wrist, but all of this seems like over exposure for my poor little man. Anyone know anything about imaging and the effects the radiation exposure has on the baby? Definitely skipping the keepsake ultrasound with this one. I think he's been through enough.

kjh6b@hscmail.mcc.virginia.edu - 35 days ago.
Hello all. I am new to this site and gratefull to have been provided the info to find it. At my 22 week ultrasound my sons right ventricle measured at 9.9mm. At 29 weeks it went up to 12mm. Tomorrow I go for a fetal MRI, ultrasound, and meet with genetics and neurology at The Childrens National Medical Center in Washington DC. Currently there are no other abnormalities found and I'm hoping tomorrows tests will have the same results. I was reading another mothers comments on a different site that she was told a large head could mean a larger then average ventricle size. I was just wondering if anyone else has ever been given this info? Both of my girls heads measured in the 97th percentile from infancy until now. Also wondering if any other Mommy's had episodes of bleeding with their pregnancy. Around 19 weeks I did have an episode of pretty heavy bleeding (enough to soak thru 2 pads) over the course of 2 days. Also wondering if any Mommy's had any other external factors during their pregnancy. A couple of days after my 22 week ultrasound I fell and broke my wrist. My ulna was able to heal on it's own - my radius was broken so bad I had to have surgery the following week to place a plate and 6 screws. Since I was pregnant they did a nerve block and I remained awake for the surgery and the way my OB/GYN explained it to me was this - If my baby were to have to undergo surgery at this point they would be giving him the same drugs they were giving me. His vents were already measuring upper limits of normal before I broke my wrist and had surgery - but I was wondering if it was possible that the surgery could be a factor in causing them to rise to 12mm? Sorry for so many questions, but since I have my fetal MRI tomorrow I have a million thoughts and possibilites running thru my head. Thank you so much for any thoughts or comments you care to share and I hope everyone knows that all of the stories on here have given me hope and encouragement. I think it's great to be able to find a forum where mother's and father's support and inform each other.

katieandiggy@tiscali.co.uk - 35 days ago.
Hi Amy, things are going ok thanks, my little one is 2 weeks old now, he's very strong and greedy lol. He's very alert, he just passed his hearing test yesterday. The health visitors were measuring his head once a week, he was 37cm at birth, on day 5 it was 37.5 and on day 10 it was 38.5. We called the pedi and they said they wasn't concerned as they expect the head to grow 2-4 cm the first month. He had it measured yesterday and it was still 38.5. I think because he was a big baby he had a lot of moulding and now it's just his head evening out again. Fingers crossed. We have a repeat ultrasound in 2 weeks to check ventricle again. My pedi said he's not overly concerned and that there are probably millions of people walking around with one ventricle bigger than the other and dont even know it. I'm not sure about the DHA, I took a big dose around 1000mg. I wasn't advised to but I read on here that people had taken it so thought it was worth a try. Samantha- sorry to hear about your MRI result. Have they given you any indication on what to expect development wise? Or what infection they think could have caused it? My TORCH test was negative but I read online that they are unreliable so now i still worry it could be infection. I think CMV Is the most common infection, then Rubela.

samanthajane107 - 35 days ago.
Hi, Have read nearly all posts on here i think and so grateful to everyone posting on here as gives some hope things with our baby will be ok. We were diagnosed with unilateral ventriculomegaly at 20 week scan, initally measuring 10.5mm and then around 10.1mm when saw fetal medicine consultant a week later. Consultant was quite up-beat about outlook and we were too as was mild and only on one side. However still agreed to do MRI which we had this week when i was 22 weeks 3 days. Got a bit of a shock as we had convinced ourselves that this was routine and all would be fine but doctor who did scan gave us results afterwards and said could see cause of VM which was what seemed to be brain injury which he suspected was caused by an infection though haven't had those tests back yet. It showed a gap going from left ventricle to outside of brain which was quite small but is still a gap which shouldn't be there! I felt sick when he was telling us. Can find very little information relating to what this might be and wondered if anyone else has had similar experience? Don't see consultant again until next monday and waiting is already killing me!

laila10 - 35 days ago.
Hi, I met with the neurologist for some problems with my baby with VM. I discussed with him the reasons for babies ventriculomegaly and he told me that a research done recently has showed that the number of babies with this problem has increased in the last 4 years. He told me that when genetic factors and viral infections are excluded, radiation and chemicals are responsible for this type of abnormalities in babies brain. when I told him that I changed my hair color twice during pregnancy and 3 weeks after, the sonogram showed VM he told me it is difficult to find relation between hair coloring chemicals and VM, but it could be that or any other chemicals.I don´t know if someone here has heard about that before?

amy73 - 35 days ago.
Hi Katie, congratulations on your recent arrival! How are things going? I'm also in UK and just wondered whether you were advised to take such an increased amount of DHA? I've started taking 300mg but wondered whether safe to take more - anyone else know? I'm interested to find out what your experience was like after you found out about the bigger ventricules, opinions and outlooks etc. Have they been looked at again since. I'm really trying not to worry and think of all the worse scenerios, but am failing miserably. The consultant doesn't seem to be too worried at present which is good I suppose. Look forward to hearing how things have been for you. Kind regards.

laila10 - 38 days ago.
Hi Katie, my baby´s weight at born was 6 pounds,but during the first year she was n´t gaining the normal baby weight according to each month of her development, she is still a tiny baby. Don´t worry your baby will be ok God willing,and always remember that each baby has a different development,even the most healthy ones. regards.

katieandiggy@tiscali.co.uk - 38 days ago.
Laila, sorry for all the questions. How was your daughter after birth, did she feed well and put on weight ok?

laila10 - 39 days ago.
Cjengo, my daughter is on physiotherapy, but she is not meeting her milestones!! I hope it is a matter of time. thanks

CJENGO - 40 days ago.
Hmm she does not crawl yet? Does she scoot? Can she sit upright? Is she in any physical therapy?

laila10 - 41 days ago.
thanks Cjengo for your post, I wish all the best for Jude. Katie: my daughter still can´t talk, can´t sit down, can´t crawl. I´m still with the hope that it could be no issue but the neurologist is insisting that it is related to her VM.Only God knows and also He is the only one who can help our little fighters.

CJENGO - 41 days ago.
Laila - Jude cannot walk, BUT my daughter Emily who did not have VM was a late walker, talker, and late teether and she is one of the smartest kids in her school now at the age of 13.

katieandiggy@tiscali.co.uk - 42 days ago.
Laila- I guess it's good news that they haven't increased further though. Is she meeting all other milestones?

laila10 - 42 days ago.
Katie,congratulation for your new born baby!!. My baby girl is now 15 month and she was diagnosed with dilated ventricles at 32 weeks of pregnancy, at first they measured 12 R-13 L, but at 38 weeks they increased to 15R-16L, and till now she is still having the same measurements. I so terrified about the fact that VM could affect her ability to walk!! but don´t worry each baby is different and miracles really exist. good-luck for your baby

amy73 - 43 days ago.
This is my first comment on any site. I wanted to say that this site and everyones comments whether positive or not so positive have and still are really helping me get my head around the whole ventriculomegaly thing. My husband and I were first made aware of this condition at out 20wk scan and have been riding an emotional rollercoaster ever since. Unfortunately they tell you the name of what appears to be wrong and that really is where it ends. The initial measurement on the left ventricle was 10.3 so were asked to come back the following day to see a consultant who remeasured and gave a measurement of 9.8 on the left and 7.8 on the right (baby turned during scan), but asked us back in 4 wks to check on the fact the measurements were assymetrical. That scan was Friday 30th December and measurement on the right side had increased to 11.2 (although I am convinced he was actually measuring the left side from the photos) and he took a reading from the other side which was difficult to see clearly as it was on the far side, of 13mm. Wow. So now we have to wait a further 5 wks to the next scan. He has now termed it Mild Hydrocephalus as opposed to borderline Ventriculomegaly. There have been no other problems picked up, all else appears normal. Its the waiting and the unknown that is the worst thing about it. All the information I have found has been on the internet (some positive and some very scary) and THE most helpful comments have been from all of you, which has prompted me to join in with our little journey, not just so we can receive much needed support but also to hopefully be of some use to others, sitting reading these comments. I particulary found your comments Turtlemum completely inspiring and informative. Your daughter sounds a truly remarkable, fantastic litte girl! I will keep this updated as and when we find anything more out. Until then all the very best to everyone else out there that are going through all same emotions and circumstances.

katieandiggy@tiscali.co.uk - 43 days ago.
Laila- I have no experience I'm afraid, my son is only 1 week old so for me it's a waiting game. Can I ask the size of your daughters vents?