Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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enya1292 - 396 days ago.
Thats great to hear Turtlemom. Any little bit of hope helps so much! THank you

turtlemom - 396 days ago.
Hi Enya, My daughter has partial ACC. I think the prognosis your doc gave was a little grim. Most peeps with this condition don't know they have it. And, I wouldn't bother with the 2nd MRI. We didn't even have one.

enya1292 - 396 days ago.
LD, I am. I just sent you a request. I am the smiley dark-haired young woman. I can't wait to hear your story.

LDMusgrave - 397 days ago.
Enya, are you on facebook? I would find it much easier to talk to you about my story there. Lindsey Dewar Musgrave, look me up! :)

enya1292 - 397 days ago.
Hi everyone.....some questions. I have been taking DHA supplements for about two weeks. My ob recommended Expectra, with 200 mg of DHA. That does not sound like alot.....has anyone doubled supplements? Its non-fish DHA and approved by my ob My update....I had the MRI done. My little girl can apparently hear, she was moving ALOT during the exam. I saw my specialist on Thursday and he said the MRI was not great, but that the report suggested agenesis of the Corpus Callopsum. Basically, the wiring between the left and right half of the brain. He didn't see this as a death sentence. On this paper he gave us it can range from severe delays to her growing up not even knowing she has it. I don't know what to think anymore. I do know that it seems as though we are just fishing for more information, information which no one can do anything about. The Dr. wants another MRI done in the third trimester but I am thinking of not doing it. It was very upsetting, the banging and pounding. The way they covered my heart and legs and left my poor, pregnant belly exposed to God knows what. I am just starting to wonder why bother if they can't do anything. I like this doctor and want to follow his lead, he has been doing this for 26 years. But I myself have not handled all of this well. This pregnancy has been difficult from the start. From low beta numbers where they thought it was ectopic, to an infection, to a previa that lasted well into the second trimester, and now this. I feel like I am on overload and can't handle anymore information followed by 'we can't do anything about it'. With that being said, the happy news is that her fluid has remained the same in one vent, and GONE DOWN SLIGHTLY in the other. I was so happy about this. In addition to this, her head measures perfectly, and her overall size is slightly above average (she can thank my 6'2' husband for her long femur length!). My specialist does not need to see me again for a month. The baby moves every day and is very active. My doctor gives me the impression that things could be much worse and that she can still be ok. I am trying to hold onto that hope, though there are moments I lose it. Any thoughts? but here's to her fluid slightly decreasing!

cjengo - 402 days ago.
Jude hearts Parker :).

turtlemom - 402 days ago.
Thanks, Jen! Parker hearts Jude!

cjengo - 403 days ago.
CUTE pictures @turtlemom!

LDMusgrave - 405 days ago.
Twinbabyboys, I am so sorry for your loss. I am also relieved to know that the other baby is doing well. I will pray for you and your family and I wish for the rest of your pregnancy to be as smooth and easy as it can be.

twinbabyboys - 405 days ago.
hi everyone. just wanted to let everybody know that our lil guy didn't mAke it. his amniotic fluid got to less than 1 centimeter... and he was having lots of trouble. :( this is a very hard time for us naturally but I wanted to thank everyone for reaching out and helping when I needed support and information the most. bless you all and wish me luck with my second lil guy who seems to be doing good so far. xo

linnyc1981 - 406 days ago.
Hi All it has been a long time since i have been in here but i just wanted to share hope. I have a 16 month old boy who had mild ventriculomegaly when in utero, we were also told he was missing part of his brain and asked to terminate Max is developing wonderful, he is walking almost running around, talking lots, problem solving and growing way too quickly :) believe in your bubba!!! Wishing you all the best for 2011!

turtlemom - 406 days ago.
Hello All! It has been ages since I've added new pictures of Parker. I just posted some from Christmas. She is now 2 and a complete joy to our family. She has severe Hydrocephalus and other brain anomalies. But, she is a miracle. Blessings to each of you.

cjengo - 409 days ago.
I rarely get on here anymore, but I am here if anyone has questions. My situation wasn't the best outcome, so I may share the other side of what can happen. Although, my son is so precious. So be sure to email, or check out my blog. You have great ladies like Turtle mom on here. God Bless everyone!!!!

cjengo - 409 days ago.
enya1292 I hate Mri's, but they let me husband back. He held my hand, and they did not insert me all the way. I was able to keep my head out which helped.

partyof5now (Sonya) - 409 days ago.
enya1292 - I was nervous about the MRI as well but I am a bit clausterphobic tho...Of course I was scared of what they may find as well. I dont know if you have ever had an MRI before but they are a bit noisy, thankfully they handed me a pair of headphones that I could listen to music during & he could speak directly to me thru them because I had to have a breath holding MRI...so every now & then he would come on & tell me to take a couple breaths then to hold it ..which was kinda difficult for a 7mo prego woman to do because you already have limited lung space as it is...then he would tell me when I could breath again. He did warm me ahead of time that due to the loud knocking noises of the MRI that it may startle the baby too...which it did, so every time it started knocking & banging my poor lil son started squirming around in my belly...felt so bad for him :( but it was over pretty quick & of course the tech wasnt able to tell me anything so I had to wait for the my doc to call me with the news...good luck with your MRI & I hope you get good news from it, it sounds like, besides the vents, everything else is good & that your outcome sounds very positive =) glad to hear it

enya1292 - 409 days ago.
We went to see the specialist on Thursday. They did another ultrasound and took 160 pictures of our baby. We then met with the doctor and learned that a) the vents have remained the same size over two weeks and b) he did not see any other abnormalities with her. THe Doctor did not present this as a death sentence; in fact, he seemed to think she might be ok even if she does need a shunt. THe neurosurgeon here does shunts all the time; its not like it is only 10 a year or something so that made me feel good. But our baby does not have neural tube defects or anything else except her vents. I must confess, I am nervous about the MRI. I just hope they don't find anything terrible. THe doctor was not big on the amnio because the baby showed no other abnormalities, and my age. He told me my chance of chromosomal abnormalities, based on the info he had was around 1%. But over all, the doctor presented it as a case he will keep an eye on. ANd we are fortunate to have him here, his office services 19 counties. He is only 20 minutes from us, and everything (including the shunt) can be done at the hospital we are delivering at. Hey, was anyone nervous about the MRI? About them finding anything weird?

twinbabyboys - 410 days ago.
hi everyone. we just got back from the doctors. although the babys vents are still measuring the same at 14...he is suffering from very low amniotic fluid. this is due to the twin to twin transfusion. none of the choices the doctors are giving us are easy to deal with. God only knows what the right thing to do is. I'm devastated and and in shock. it's unfortunate that our baby has something more than dialated ventricles to battle with. you have all been so wonderful and I will forever be grateful for all the information and support you have given me and I will always look up to what wonderful moms you all are and all the love you each have in your hearts.

partyof5now (Sonya) - 410 days ago.
To all the new mommies on here that posted recently & all the others that are still prego & waiting to see how their baby is once born...try to stay positive & keep faith in your baby. I know it is heartbreaking what you all are going thru right now & feeling helpless...its sucks I know, we have all been right there with you so know that you are not alone. You can read my full story in my blogs (3 or 4 of them) on my profile but long story short...We were givien worst case scenerio as well. At 28 wks U/S while in pregnancy bliss because we had passed all the blood work & early tests with flying colors we were informed of our sons enlarged left vent, classified as VM & shuffled off to a specialist without much more said from my OB, at 29 wks we did a fetal MRI & level ll U/S when we were told his left vent measured 14+mm, told he had brain loss in that area as well(Colpocecaphly) & they pressed the issue of late term aborting him due to his possible issues if he survived birth...he had no other abnormalities on any U/S or tests, appeared absolutely normal to us & moved about as any normal baby would in utero so as hard as it was due to all my docs were telling us & everything on the web we held on to hope that he would be ok. Continued with weekly U/S's to check fluid levels, non stress tests, Blood Tests for viruses I may have passed to him & an Amnio at 34/35 wks all to come back fine except for his vent...it did decrease a bit as we got closer to full term & last we checked at 35/36 wks it was still a bit enlarged but closer to normal, his brain loss looked better as well, my docs were both stumped at how he can appear so normal yet be doomed in their books...I too looked at his 4D U/S pictures daily that we had done just 2 days prior to finding all this out & cried over his cute little pudgy face that I was already head over heals in love with...I dont think there was a day that went by that I didnt cry for him & his health...mostly while I was alone, that was my hardest time because it left my mind free to wonder about him. My son was born of his own accord at 39wks exactly appearing perfectly healthy like any other newborn, a beautiful little boy...they did a CT scan at 1day old...his docs were completely wrong about the brain loss (colpocephaly), his brain was all normal & his vent did still show to be slightly enlarged for no apparent reason even to this day but our neurologist told us most likely he inherited it from myself or his father...just a trait passed down. My son is 14mo old today, has been standing since 7mo, walking since 9mo & running since 10mo....he met all his milestones as he should have, speaks 5+ words (mama, dada, no, done, dog, etc), he knows a couple words in American Sign Language as well (eat, more & milk), he is a very lovable little guy that melts our hearts with each & every one of his smiles...Our neurologist released us from needing to see him again when Kaden was 9mo old, we did not opt for another MRI at that time so we dont know if his vent decreased, stayed the same or got larger since his birth but as long as he is developing normal we are fine not knowing. I think back on our time of dispair during our last trimester with him & wish that it had been a better experience being that he is our last but then again all we went thru I firmly believe made me appreciete him & everything he does 10x's more than I would have had it been a normal pregnancy. I do at times want to go back & smack my 2 doctors for them pushing on us that we should terminate him, if we had listened to them we would have termed this absolutely perfect little guy for no reason, I spent 10+ yrs waiting for a son after my daughters were born so I didnt want to give up on him that easily...I am glad we didnt because I just cant picture our lives without my little miracle in it. Everyday is a blessing, I thank the heavens above for him daily, I marvel at my miracle that he is. Please know that docs looking at babys brain inutero is very new, they didnt do it 12 & 14 yrs ago when I had my daughters, it is not perfected yet & doctors as almighty as they act & in all their knowledge can be wrong too. Children/babys are miracles to begin with & a babys brain especially while in utero goes thru so so many changes daily that it doesnt look the same from one day to the next plus everyone is not the same right...I dont see how looking at it is ever going to be perfected, if so at least not for a long time. my point in all my rambling is please try to stay positive, alot of times our babys turn out perfectly healthy after all this. So I continue to relay a phrase to you all, it was said to me by a mommy on here with a little one older than mine so she had been in similar situation & her words were very powerful at a time when I needed it most & have stuck with me ever since...'believe in your baby'. I wish you all a good new year, will pray for you all & your little ones...I know it is hard but try to stay positive for your little ones, they need your strength & your love =)

up north - 411 days ago.
Hi I wanted to update for all the moms to be who are new on this forum. At 27weeks my baby's vent measured 12mm (just one side). By 32 weeks they were both 14mm and 15mm. At 32 weeks they stopped growing ( which happends alot I believe). Anyway my baby is now 15months prob has the same size vents, dont know as once he was born we never looked into it. He is perfect, thank gd. He has just started walking he speaks 5 words and has hit all his milestones so far. I wanted to tell you that all the women on here understand what you are going through. The fear, shock and numbness of wanting the LOs here so it can be over but dreading facing what could be. Thanks to all those on this forum who helped me and now we will help you.....

LDMusgrave - 413 days ago.
I really hope that my daughter's outcome so far will give hope to other mommy's... my daughter is doing wonderful, I know there may be bumps along the road, but I couldn't be happier with my little one. Also, they are saying her hydrocephalus is caused by aqueductal stenosis.

LDMusgrave - 413 days ago.
My daughter's vents measured around 70 mm and 32 mm at birth, she was born by c-section at 36 wks on the dot. She's actually not even a month old yet. This is the only issue she has, she had a shunt put in right when she was a day old. Throughout my pregnancy, I was very depressed and scared. I cried a lot. I turned to God and put everything in his hands, I could not 'murder' the child he had already breathed life into. My daughter is now 24 days old. She was born Dec. 7th and we came home Dec. 19th, in time for Christmas! Her name is Marlena and she's doing WONDERFUL!!!! She will be in early intervention programs to help her development, which is what a lot of people seem to be concerned about (development) but no matter how she 'turns out' she's perfect in every way to me. And who knows... she could surprise everyone!! This is my beautiful daughter Marlena Nichole, a few pics of her. This one was right after her surgery. (http://img209.imageshack.us/i/15673016869020236121569.jpg/) This one is after her steri strips came off and the incision looks great. (http://img251.imageshack.us/i/shunt.jpg/) And these last two are just my beautiful baby girl with some cute bows. (http://img252.imageshack.us/i/marly2.jpg/) (http://img20.imageshack.us/i/marleyd.jpg/)

enya1292 - 414 days ago.
Turtlemom and Bailey---thank you for the kind messages you left on my profile. I am not sure yet how to return them on my profile or yours. I just wanted to make sure I thanked you both somehow. I go it tomorrow to the specialist, trying to be positive.

twinbabyboys - 415 days ago.
Here's a little update. MRI results came back saying that there is no abnormality or obstruction to the brain. Basically the ventricles are dilated and remain at 14. They are saying Aqueductal Stenosis. Anyone familiar with that terminology? I also got 2 amnios yest. Worst thing I've ever had to do :( The baby that has the ventriculomegaly also has very low amounts of amniotic fluid to battle with as well. Still trying to keep my hopes up, taking it day by day, appt by appt and trying not to lose my mind in between. We go in this Monday again to see how both babies are doing. :(

enya1292 - 416 days ago.
@Twin I am 20 weeks. Just hoping for some kind of miracle here. Maybe the fact that he saw no other abnormalities will help. I wish you luck too. @Laila Thank you for the message! Just hearing and seeing people say that she might be ok helps. I carry her sonogram picture with me everywhere and pray that I don't end up having to bury it at some point. I just stare and stare at it and am sad that anything could hurt her. Is your little girl here yet? How is she doing? Thats an interesting thought about the meds.

laila10 - 416 days ago.
Hi enya!! I read ur story you made me remember the hard time I had in the third trimester of pregnancy. I also had my baby girl(15 and 16 mm of VM) through IVF,pls ask ur doctor if the hormone medication could be reason for that, and pls tell me if u find an answer. Enya, I can only say to you please don´t cry even for a second, ur baby will be ok.I know it´s hard, but now I am blaming my self for every tear and every bad time that could have hurt her. Colse ur eyes and imagine her into ur arms smiling. I´m telling every mom in the same situation pls it is enough to ur little one in ur pillies to have this small issue that they r having, pls try to replace it with positive energy and send it to him/her. U can read my story I was very upset crying all the time during my pregnancy, now I am still not sure about the outcome of this problem but at least I ´m trying to give my baby all the positive energy that I can. Good luck and best wishes for all our little ones.