Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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partyof5now (Sonya) - 512 days ago.
A baby will make love stronger, days shorter, nights longer, bankroll smaller, home happier, clothes shabbier, the past forgotten and the future worth living for.” -- Anonymous...I saw this quote & loved it the second i read it so I had to share it :o)

partyof5now (Sonya) - 512 days ago.
LDMusgrave - praying for you both, yes you do have a little fighter!

LDMusgrave - 514 days ago.
I had the first ultrasound since diagnosis today. My baby girl's left vent measured in at 24 mm which is about the same it was a month ago, but the right vent has grown to 36 mm, whereas it was symmetrical. The doctor told me today that there's still a chance that she has holoprosencephaly, which a fetal MRI can hopefully determine if she has or not. The doctor told me today that it isn't the size of the ventricles that determines the neurological outcome of the baby, but the underlying cause. If she does have holoprosencephaly, then the outcome is very grim. If she does not have it, and the problem is caused by a blockage of the aqueduct, then there is a lot more hope. I am 25 weeks along now, and her head circumference is as if I were 30 weeks. I've been keeping the best positive mental attitude possible, but today is putting a strain on my state of mind. She still kicks me lots, which lets me know she is going to be a little fighter. We are two strong girls, we just have to hang in there.

kmirak - 519 days ago.
partyof5now- Thank you so much for sharing with me your experience, it helps a lot to know that we are not alone and that there is always hope and miracles can happen.. I just red your block and I see you went through a thought experience..thank you for the support and now I am feeling better and I am going to focus in my baby as you did.. we are having another ultrasound on Oct 15 and we have to flight to Honolulu because the machines here in Maui are not as good as the ones over there...hopefully the vents will shrink itself.. thank you again. Karim

partyof5now (Sonya) - 519 days ago.
addisonl - is there 2 different docs your daughter is dealing with that is telling you guys 2 diff things? It the only reason I can see her being told so many diff things...unfortunately, as her docs have already said there isnt much they can do for her, they cant tell how serious it is going to be till after baby is born...it sucks, I know & we heard it over & over again with each doc appointment...it was frustrating because I just wanted clear answers. The amnio should tell more for sure & maybe give a reason....it didnt in our case, my sons VM on his left side is still unexplainable to this day other than our neuro telling us it is just the way he is...& our MRI showed at 29 wks 14mm left vent & brain loss in that area, by the time I was 35 wks the vent had returned to just above 10mm (almost normal) ...when my son was born at 39 wks he had a CT scan at 1 day old & it showed no brain loss & his problem vent was only slightly enlarged but not above the 10mm mark we were told all thru the last 10 weeks of pregnancy, my son is 10 mo old now & is my healthy, perfect miracle...best of luck, I hope everything turns with good news. please keep us updated...our thoughts are with you guys

partyof5now (Sonya) - 519 days ago.
kmirak - unfortunately there isnt much you can do at this point besides try to stay calm & possitive for your babys sake. Its rouhg getting online & googling all the doc lingo but this site was a big help for us...put alot us at ease of everything was going to be ok. At 24 weeks you have a good chance that your littleones vent will correct themselves on their own. A fetus brain is so amazing changing daily. Its a helpless feeling I know not being able to do anything. When we got diagnosed at 29 weeks I even went as far as doing healing meditations every night where I layed down, relaxed, thought only of my baby, pictured him in there moving around & started at his head & pictured everything healthy & perfect, pictured his brain healing itself, the vents going smaller to normal & healing itself & I worked my way on down to his little toes picturing every part of him healthy & whole...it I must say it was a relaxing way to end my hectic stressed tearful days...plus I think it was a bonus going to bed each night focused only on my son....dont know if it did any good but it was the only thing I could actively do to try to help my son...

addisonl - 520 days ago.
Hello, my daughter is almost 18 & 34 weeks pregnant with a boy. For the past month & a half, she has had several u/s & a MRI. We were 1st told that the baby had fluid on his kidneys & brain. The 1st u/s showed vm measurements between 11 - 12. Doc told us that it was that it was slightly above normal & there shouldnt be any problems but wanted to do a MRI just to check. A few days after the MRI, they called my daughter & told her everything was the same. I went with her to doc after MRI & we were told that everything was leaning toward the normal side just a slight chance there could be a problem. Today we went to have another u/s at her specialist & were told that the MRI showed vm measurements of 14 & the u/s today had the same. His kidneys are now normal. We were also told that he has Dandy Walker & may have Downs Syndrome. They scheduled my daughter for amnio test next monday. This evening I have been doing research & have no idea what to believe.

kmirak - 520 days ago.
Hi Maggiek, Thank you for your conforting words..I really need that..and I am so happy that your baby vents are shrinking and doing better..lets keep in touch. Thank you again

kmirak - 520 days ago.
Hello, my name is Karim and I am 24 weeks pregnant and it is my first and only child... Yesterday September 14, we went to get the ultrasound and Dr. told us that our baby has ventriculomegaly and it measure 11mm..it was a shocking news for my husband and I, the Dr. said it could fix in it own..and that I have to go back to get another ultrasound in four weeks..I was really depressed and my husband almost passed out at the Dr. office..so as soon as we got home I started searching online and I found this site.. it is our first and only child..I am 34 years old and I would like to help my baby to have a happy life.. I do not know if I need to do something in my own?..maybe get some extra vitamines or request any help to the Dr.? PLease is somebody can help me to know that there is something I can do.. I feel a little relive now that I am reading your posts here and I know I am not alone.. Karim

partyof5now (Sonya) - 520 days ago.
maggiek - Clausterphobic here too...when we had our fetal MRI done they gave me head phones so they could talk to me & give me instructions of what they wanted me to do & how long...I had to have breathe hold images done so the tech would tell me when I needed to hold my breath, for how long & then when to let it out & while he wasnt talking to me the head phones were playing music so that helped me distract myself & I closed my eyes because I didnt get to have my head out so I started having a bit of a panic attack with the surroundings so scrunched in on me so closing my eyes helped....best of luck

maggiek - 521 days ago.
Hi UpNorth.... Thanks for your story...Glad my head gets to stick out....that will be better I think :) So your name upnorth I am assuming you're from the U.K.... I am originally from Manchester.

up north - 521 days ago.
I am claustrophobic too. When I had my MRI, the saving grace is they are interested in the baby, not you!. This means your belly goes in and your head sticks out a bit at the end. I found looking out of the opening or eyes shut was the best. In truth I was praying my heart out whilst I was in there. I was so focused on that the rest kind faded away. There are lots of really loud beeps and I was getting really depressed in there thinking this whole thing must be the worst thing that has ever happened in my life whilst at the same time remembering that the person who came out before me was a 10 year old girl. Anyway I got through it like everything else and have a wonderful cheeky fat little monkey who is soon to be 1.

maggiek - 521 days ago.
I go for an MRI on Thursday just to confirm that everything is ok....I am nervous as I am claustrophobic ..... Any tips from anyone who has had an MRI done?

babyboy43 - 524 days ago.
MaggieK - that happened to us too! He only had one problem vent. It was measuring borderline vm (10.03 mm). Over the last several weeks, it keeps measuring smaller and smaller. Just last week they remeasured and it is now 5.2 mm. I deliver in 4 days via c-section (only b/c my 1st baby was a c). The doctors don't seem concerned at all. Prayers have been answered! This has been an emotional roller coaster! Glad to hear the good news for you as well!

maggiek - 525 days ago.
Went for my Ultrasound today and apparently the Vents have shrunk down to 6 and 6.5....is this possible that within 10 days they have shrunk??? I still have my MRI on Thursday....so hopefully everything is still good.

two-on-board - 526 days ago.
Hello Sam, I am from the UK too. I was monitored every 2 weeks, but I think that they would have preferred every 4 weeks. I am surprised that they have not offered you the opportunity of an in-utero MRI scan, I think that these are really suggested from 30 weeks in the UK although I do know of people who had them much earlier. So much can change in this time, not just for the worst, I guess it depends on how much the information might effect the way that you feel about things, or how it might change the course of the treatment that you might receive, in hindsight I wish that I had had less scans and investigations, although this is all very well when you have hindsight on your side. It might also be helpful to discuss your babies prognosis with a neonatologist, they are often much better at prediction of outcome as they follow babies up after birth, I found ours very helpful. So sorry to hear of your worry, I hope you are able to get the answers that you are searching for, the most frustrating part of this journey is the wait and see expectation that is placed on us by the medical profession when all you want is someone to tell you.

turtlemom - 526 days ago.
Hi sambreese, The 25% is about right. If the measurements are under 12mm, there is only a 3% chance of problems if it is greater than 12, it jumps to 23%. 8 weeks is a crazy amount of time between scans. I'm in the US and was monitored every 3 weeks once they figured out things were awry, but we were in the severe catagory right off the bat. Can you get a second opinion and change doctors??? Blessings to you and yours!

sambreese - 527 days ago.
hi everyone. im 26, from the UK, and 21 weeks pregnant with my 4th baby. i was told by the sonographer who did my 20 week scan last week, that my baby girl had dilated brain vents, measuring 14mm. ive since had a consultant scan, who measured them at 13.1mm. ive had 'torch' screening tests done, and offered an amniocentesis test, which i declined, and opted instead to continue with the pregnancy, and have the baby's vents monitored. they then offered me another u/s scan in 8 weeks time, and dependedant upon what is found, maybe ct scan on the baby's brain, either before birth, or shortly after. ive been told that theres a 25% chance that my baby may have neurological development problems, but nothing more has been said about about the condition. im so confused. considering that the option i opted for was to have the condition monitored, not to scan again for another 8 weeks seems crazy. such a lot could surely have changed way before them, wether it be good change, or bad change. i have 3 other children, all under the age of 4, and if baby number 4 is going to have some sort of development issues, then ideally, the sooner i'm aware of what they may be, the sooner i can prepare us for the issues that may face us, but nobody seems to be in any rush to check the baby sooner. any advice by parents /people who have recieved a similar diagnosis, would be gratefully accepted. sam

turtlemom - 527 days ago.
Hi LDMusgrave, we had U/S every 3 weeks once we were diagnosed.

partyof5now (Sonya) - 527 days ago.
LDMusgrave - my docs monitored my son very closely after diagnosis...he saw me weekly, I had to have non-stress tests 2x's a week & they also did a quick ultrasound each time to check fluid levels & my sons measurments were not as enlarged as your childs but I am also over 30yrs old so maybe that is why as well??? but every doc is different & every doc treats differently...maybe you can call them & let them know your concern & that you would like things checked out sooner but then of course how often a doc can see you also unfortunately goes by how much your insurance will cover as well...which sucks. But nothing hurts by giving your doc a call & letting them know you want to be seen sooner for monitoring to check your little one...sometimes docs feel all they have to do is minamal to get by...just remember the squeaky wheel gets attention...lol

LDMusgrave - 527 days ago.
I had a fetal echo done yesterday so it is looking like this is isolated so far because everything with her heart looks great! She still kicking a lot and growing fast. I still have no clue how her VM is progressing. This is what I want to know the most. But they are waiting an entire month to look at her brain again from the day of diagnosis!! Shouldn't they be monitoring this much closer than a month later to watch what it's doing? A quick reminder to those who didn't catch my first post; my daughter was diagnosed with massive vm at 20 weeks u/s with 23mm vents. Amnio results returned normal chromosome structure and no infection.

partyof5now (Sonya) - 528 days ago.
micajovic - They recommened it even tho those tests were all done & came up clear because there just wasnt any explaination for Kaden left vent to be enlarged...they found no cause, no other abnormalities & being that just the one left vent was the only one enlarged it gave the docs an even bigger cause for concern because typically VM presents itself with both vent enlarged....so I guess they were looking for other chromosomal defects that could have caused it but came up with nothing...just unexplained & after all that & all those tests his CT at 1day old showed no brainloss like MRI & US had been showing so his Colpocephaly Diagnosis was removed...still to this day we have no explaination for the enlargement...i guess it is just the way our son is suppose to be. But the last 10 weeks of pregnancy with him was the hardest thing I have ever gone thru in life so far & I feel for you as you go thru this as well. A very encouraging mommy on this forum once told me in the 1st weeks of my sons diagnosis that helped me get thru alot of the emotional roller coaster & it has stuck with me ever since, so I will pass it on to you...'Believe in your baby'...they are such miracles! I honestly dont know what I would have done without the support & encouragement from the other mommies on this site while going thru everything we did, it gave me my only hope for my son to be ok because nothing my docs said was encouraging...so i promised myself & my son that I would stay on this site & help give hope as well to other mommies that follow going thru similar things I went thru with my son...wish you & your little one only the best :)

partyof5now (Sonya) - 528 days ago.
laila10 - my son was born natural delivery, I was worried about the same thing as you mentioned because I didnt want to put more pressure on his little brain going thru birth canal because I felt it may make things worse but doc said he would be fine...his head measured as it should not bigger like in some cases due to fluid, did not have hydrocephaly so that wasnt an issue but I was still worried...talk with your doc they should be able to look at your case & let you know if safe to deliver normally or if better to do C-section...I was told by my doc that due to babys skull not fused together yet the platelets shift just so it safely goes thru birth canal & not put pressure on babys brain in the process but of course that is my experience & again my son did not have fluid buildup & his head measured normal so it was safe for natural delivery...best thing to do is talk with your doc & go by what you feel is right in your mommy heart.

partyof5now (Sonya) - 528 days ago.
micajovic - we had the similar case of being diagnosed with VM late in pregnancy like you are experiencing. We had the chromosomal testing done at 12 wks & the 2nd set done at 19 wks all came back clear, every US was fine till my US at 28 weeks & that is were they noticed my sons enlarged left vent at 14+mm, right one within normal range of under10mm. At 29 wks we did the level ll US, then opted for the fetal MRI which again confirmed the enlarged left vent & we were told brain loss in that area as well, we then had US every week, blood test to check for infections & then opted for an amnio as well...all blood & amnio came back clear & every US (unclear) said vent was enlarged but with each passing week till 35 wks it decreased on its own to just above 10mm mark...so we stopped checking & waited for his arrival & to find out for sure if our son was ok...CT done at 1day showed only a slight enlargement & no brain loss like we were told. My son just turned 10mo old last week & he is perfect, running around & smart as a whip...not like anything they told us he would live a life of...good luck to you & your little, you both are in our thoughts...please keep us updated on how your little one is doing.

turtlemom - 529 days ago.
There is no reason for a section with just VM. If the head is measuring ahead they could recommend it but otherwise there wouldn't be a reason for it.