Ventriculomegaly

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  • #6992641

    RPage
    Member

    I also have been reading this forum for a while and was going to leave posting until I had my baby but he is so close now- next week. His history- very high likelyhood of chromosomal abnormalitys given at nuchal fold and blood test in first trimester. Refered to MFM. At 15 weeks no sign of anything amiss on ultrasound apart from SVA. At 19 weeks US choriod plexus cyst found and also SGA. At 26 weeks they said choriod plexus cyst had changed to ventrilomegaly. with vents 8mm and 10mm. The larger vent went to 12 mm but by 34 weeks had gone down to under ten. So we are back to small for dates and just SVA. I think my EDD is wrong by a week and a half and hopefully this explains the small baby. Trust in your baby listen to the doctors but try not to stress to much as things do change and hopefully I will be back in two weeks with news of a healthy baby.

    #6992897

    Indigodingo
    Member

    Hello everyone! Hope this message works properly. Just came to introduce myself – like so many others here I have had confusing and distressing news about my baby having an enlarged ventricle, and like so many others here, reading these messages has been a great consolation.
    My quick details: 21 week scan showed one ventricle at 10mm or just over – we were told not to worry (and I really didn’t) and to come back to check in 4 weeks. 25 weeks showed 12mm or just over – with 3 different people including a specialist doing the measuring. We were told ‘as long as it is isolated (which it currently seems to be) and doesn’t grow there is nothing to worry about.’
    We are to go back for another US and possible MRI in about a week and half. I am 37, early genetic testing showed no problems or risk. Have not yet had a blood test or amnio.
    Then of course the worry started – what if it isn’t isolated? What if it does grow? So many what ifs….
    I am calmed being here, and I dreamed last night my little boy said to me ‘stop looking for things that are wrong with me!’ 🙂
    Of course though I want to be realistic and prepared.

    I just want to say though, the thing that freaks me out most of all, is how ‘educated’ doctors seem to be making such rash decisions (the advice I have read here for late term tx) base on such little knowledge. And how they really don’t know very much about this at all.
    I have been a researcher in my career, and it strikes me that here we have a new set of data coming in – the new ability to measure ventricles on ultra sounds due to technological advancements, that has not been matched by improvements in application of that knowledge, longitudinal studies or even very basic counseling methods. This to me is appalling.
    1. It is obvious doctors don’t have enough information to understand variations from the norm in how fetal brains develop. They know basic normal, and they know extreme variations that are damaging. Now we can measure these variations with more accuracy, I hope someone somewhere is gathering this data and studying it properly. This should then peer reviewed and widely shared.
    2. These studies should also be followed up with long term studies, including a control group of those with so called ‘normal’ ventricles all the way through pregnancy, those who’s vents changed during pregnancy, and those who’s were enlarged at birth and beyond. Not just early developmental milestones, but performance in school etc. And who knows, there may even be some clustering of abilities associated with this symptom, not simply ‘delays and problems.’
    3. It is not simply the lack of information about cause and treatment of this symptom/condition that concerns me, but the seeming lack in the medical community of any curiosity about it. It seems like not only do doctors happily admit they know nothing about this, they seem to not even care that much. Is it age related? Environmental? Heritable? Are there any improvements seen when taking DHA supplements or not? Why is no-one studying this????
    4. The greatest travesty of all – the abysmal counseling that occurs around this. That so many women are advised to terminate what may turn out to be a perfectly healthy baby, that so many women (and their partners and families) suffer so much pain and sadness and confusion is just unconscionable in my opinion. That we have to scour the internet to find scary medical articles (clearly all that many of these doctors have read), that the only way we can connect with other women going through this is in pregnancy forums or through some brave pioneering women’s blogs, is just not good enough. This thread is the third most popular pregnancy one on this site (after the general one and the one about later age pregnancy) – that is amazing. And I have yet to find a better forum or site. There is no easy to access information anywhere out there for mothers and their families and friends. The medical community really needs to step up.
    All of this really is not good enough. Lives literally depend on this!

    I am sorry, I am by turns scared and sad, and optimistic too – but my emotion is currently manifesting as outrage. I am hoping I can direct my energy productively! This is my first stop. Thanks to anyone who bothered to read this far. And thanks to everyone who has posted – I have read them all! You are all amazing women coping so well with such distressing uncertainty, and offering so much to others with your kind words. You help me to feel stronger. For that me and my baby thank you!

    #6993153

    cheffreda
    Member

    I am 22 weeks they saw it in the 20 week ultrasound. I have just decided to opt out of the amnio as I will not terminate no matter what. I have already had an mri on the baby too.

    #6993409

    Katieandiggy
    Member

    Sorry to hear that laila. How are her fine motor skills? Does she follow objects, grab toys? Has she been tested for metabolic problems?

    #6993665

    i-am-pregnant
    Keymaster

    Thanks turtlemom, I have 2 weeks left so even though it will be hard to not think too much about everything, I will try to enjoy the last couple of weeks. As for the lobar holoprosencephaly, this particular doctor told me that if it is actually holoprosecephaly then bub will be unable to function normally and he’ll never be able to look after himself, basically a vegetable and that he would need to go into palliative care. So to hear that some bubs with lobar holoprosencephaly and hydrocephalus are doing well is a bit of a relief. Fingers crossed bub is a tough little man!

    #6993921

    TurtleMom
    Participant

    Davjoyce, I’m sorry you are anxious. Unfortunately, this is a time will tell situation. It is very likely that your baby just has larger than normal vents and everything is fine. I have seen this happen before and I hope katiediggy will pop by. I can think of about a dozen little ones with this situation who are typical and have slightly enlarged vents. I can think of a few who have developed a speech delay or a motor delay when they are a toddler. But, I can also think of a few friends who have ‘normal’ children that have speech delay too with normal vents. Everything will come into perfect perspective when you give birth and you see your little one and they are born ‘perfect.’

    #6994177

    mummy4812
    Member

    I am new to this and after some advice from people who will understand my recent turmoil of emotions. At my 20wk scan we were informed that our little girl has a prominent fourth ventricle. We were immediately put under consultant led care here in Wales and I was left to worry and goggle (not wise) over a weekend before being allowed to ask someone all of my questions. Basically her fourth ventricle measured 9.8mm at the 20wk scan on 13th Feb, but by the time we saw the consultant on Monday 16th Feb she only measured it as 8.9 and 9.3 on two separate measurements. They have since sent us for an Mri scan in Bristol to allow them a detailed look at our daughters brain and we are waiting the results of this as we speak. My husband is incredibly positive in all of this and feels there is nothing wrong and the consultants are just being over cautious but I feel my hormones ay be clouding my judgement and the moment and I am preparing myself for the worst, although not really knowing what that is. I just feel a little lost at the moment and would appreciate any words of advice or comfort from other mummies please. I would like to say the consultant seemed positive in the issues with her brain were the only ‘defects’ they could find and so they don’t believe this is a chromosomal issue but again I really don’t know…

    #6991618

    TurtleMom
    Participant

    Deziree, I’m sorry for the news today. It is the opposite of Parker’s condition and I am not as familiar. Bless you and your baby!

    #6991874

    mariska
    Member

    Hi Andrea Tan, sorry for my delayed response.
    Benjamin’s headsize measurements since birth are: 3 weeks old: 38.2 – 2mtns old: 39.7cm – 3mnts:41.1cm – 4mnts: 42.8 – 6mnts: 45.3cm – 7.5mnts: 46cm. His head growths is in line with the growth curve (big, but not too big), so that’s why no one is worried. His length is slightly above average only his weight is low. Benjamin got a scan on his head straight after birth (like they do with us when we are pregnant) which was ok. That was it. The only thing they check now is head size and how he reacts and moves. After reading your note I now get why they were so pleased with Benjamin grabbing things with both hands. He moves all the time (but no crawling or anything like that). he roles over, but only if he has to, he is not really into it. Other than that he is very social and likes being around other childeren (and trying to get attention from them). Which is also an important good sign. Hope this is useful information for many of you on here. Hang in there and keep us posted. Thinking of you. Mariska

    #6992130

    upnorth
    Member

    hi
    I had my MRI today, was a little scary. Was in the machine for an hour and a half as baby kept moving whilst they were trying to scan so they had to repeat stuff. Am going back in two weeks for the results. Am just ready to have this baby already and deal with any problems once its here……only 3 weeks to go.

    #6992386

    Hello everyone, I guess I am another worried mom… Here is my story… If anyone is in the same situation, please let’s chat…

    Week 17: Amniocentesis (caryotype OK)

    Week 23: Left ventricule measured 10.4 mm with a cyst (I was told not to worry). Blood tests OK (no recent infections like Toxoplasmose, I am immune to Rubella and CMV)

    Week 27: Left ventricule measured 10.4 mm, but cyst had disappeared 😉 Had a nice Christmas holiday as I was sure the ventricule would decrease with time…

    Week 28 (2010 new year surprise): IRM: all is normal except the left ventricule, now at 16.5 mm ;-(

    Week 29: a lot of surfing on Internet. On my own initiative I have started taking Omega-3 DHA supplements (daily recommendation is 600 mg, I am taking 3 times that daily, so 1800 mg). I have an appointment with my homeopathe to see how much I can take, hoping this will help reduce the ventricule…

    Loads of articles re severe ventriculomegaly here: http://www3.interscience.wiley.com/search/allsearch?mode=similararticles&DID=113508290&page=1

    I am worried of course, but because there is no pronostic, I need to have faith in my baby boy…

    If anyone has any experience about maximum dosage of Omega-3 DHA or is in a similar situation, contact me please!

    #6992642

    laila10
    Member

    nordic, partyof5now – I really appreciate your help and the information you send. I’m wondering why the doctor didn’t ask me at the hospital to do the TORCH blood and toxoplasmosis tests till now! I think It coud be helpful in my case, specially I refused to do MRI, amniotic fluid test.
    when I talk to her she told me that it will not change any thing till the baby is born, but as I ‘ ve red in this web site that some times VM is caused by infection and the mother can take antibiotic. I m really getting very confused and worried about my baby. Thanks a lot

    #6992898

    LDMusgrave
    Member

    Hi Deedee, are you on Facebook? We have an awesome group of moms who have babies with hydrocephalus (most with shunts.) I am Lindsey Dewar Musgrave on there. Turtlemom was the first mom I met, her and her daughter are sooo amazing! My LO is 5 months old and her ventricles measured 70 mm and 32 mm. VERY LARGE! She’s doing really well so far!

    #6993154

    cjengo
    Member

    Cheffreda – I stayed with the same doctor but I was consdered high risk. I was seen every two weeks. I also saw a perinatologist once a week.

    #6993410

    laila10
    Member

    katie,my baby is doing many things like other babies in the same age. I take her to physiotherapy sessions, she still can´t walk without help of baby walker, but she is better than 3 month ago en her movements. when she was born her head measurements were ok, the head continued growing normally till 14 month, then it stopped till 19 months. I really don´t know what does that mean, does it mean that she will not grow more and she will die or she will have some disabilities? i´m going mad

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