Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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cjengo - 308 days ago.
Sonya - I agree 100%. You should always keep hope. I am glad you are mentioning the education. I posted my prior comment the other day because if it hadn't been for my research on infanitile spams I never would have caught Jude's seizure. Everyone in here worries.....that's normal. The best advice I ever got was from a doctor that said 'Jenn you have to make the decision to move forward or terminate.......and I know you want to move forward so therefore you do and you never look back. You march on with a positive attitude for you and your baby and you be the best medical advocate he ever could hope for'. Amen!

samismum - 308 days ago.
Hello everyone again. I'm fairly new to this site and haven't worked out how to use it properly. I have received messages in my profile and don't know how to reply to them yet. I thank you all for your support so far. Right now I'm so very stressed out. I don't know whether to be happy or sad. The whole pregnancy has been ruined for me. The little boy I'm carrying (32 weeks) has ventriculomegaly. Up till last week the vents were progressive and enlarged to 16mm. Last week we were told that they had not enlarged and were still 14mm and 16mm however thy told us that our baby had cortical maturation??? Everything else has come back normal, blood tests and full amnio. I'm so happy that the vents have stopped growing but now this new thing of cortical maturation? I don't know what to make of it. The specialist said that the surface of the brain should be bumpy but our baby's brain surface was too bumpy eg deep valleys and high bumps. We are due to see a team of specialists and neurologist next week but I am going crazy right now. They are still supporting and pushing for a termintion! How can they do that unless they think my child is going to be very very sick? I'm confused and very disheartened. My husband has experience servere mental disability in his family and does not want to experience it again, he is very effected by this. He thinks we should just listen to the doctors. Has anyone heard of too much cortical maturation and ventriculomegaly and it's outcomes? I have searched the net but can't find any info about it, only about delayed cortical maturation. What shall I do? I'm so unhappy.

partyof5now (Sonya) - 308 days ago.
deedee26 - I do agree while I always say to try to stay possitive thru this even tho it is hard I mainly say it because our babies can sense our fears & unhappyiness & thats just not good for them in my opinion. So at the same time I do think it is wise to educate yourself on the possible care that may be needed when your child is born so altho I always feel you should hold hope in your heart for the best you also should be educated enough to know what is going on with your child if things dont turn out so well

rkt1n0@yahoo.com - 309 days ago.
Thank you all for all your support on this site. There are many great happy ending stories and I really pray that my would be too. I am not sure how to be prepare for worse. I am not sure if I am even strong enough to take care of a normal child. Financially and emotionally. Ohh, boy I am going to need lots of help. Please keep the information flowing. This will help many thousands of new parents in future. We have one more appointment next week let's see what would doctor say about the size. I will keep you posted.

deedee26 - 309 days ago.
So many stories here and most of them are very heart warming am makes me feel a little more hopefull about the birth of my baby! The scan is still 6 days away but to me feels like decades i think for most mothers is the fact that u have to wait for an agonising period of time to find out whether baby is ok or not or wat would baby need. Sometimes it feels like I won't be able to cope with having another baby in the nicu thinkin that I'll be going home with out my baby again it was the hardest thing to do before an thinking about it now it will be the hardest thing to do now everyone tells me to be positive but at the same time u have thing about the if, fair enough it helps been positive but wat if u felt positive then it all come crashing down I think that somehow we should all prepare for the better an the worst! Am not trying to dampen anyones spirit am just sayin that although been positive it's a good thing been prepared for the worst it will be less shocking or hurtful cos u were expecting a good outcome rather than the bad one that's how I been feeling lately!! Sorry for the sad comment dont meant to offend anyone either!!

bailey1 - 309 days ago.
hi all! i haven't been on here in a long time- just wanted to write (an abridged version) of my story for anyone new... my son's bilateral VM was found at 15 weeks- i didn't get an exact number, but the doc told me it was 'moderate.' i then had all the tests done and u/s every few weeks. from 15 weeks all the way till the end- the vents kept fluctauting; ranging from 17mm to 11.7mm (more towards the end). i was told everything from acqudecutal stenosis to CP to learning disabilities to termination. there was only 1 doctor (out of MANY that i saw) that said he could be normal bc it was isolated VM. i often felt like the ladies on here knew much more than the doctors. the nuerosurgeon told us we would DEFINITELY need a shunt put in a few days after birth and we were basically planning for the worst. no one ever explained to me why the measurements were going up and down all the time and why the head circumference was always measuring totally normal and completely on-time with gestational age. when i finally gave birth, the docs were shocked that my son was 'normal' and he did not have to go to the NICU or need a shunt. at 21 months, he is developing normally and doing everyting he should. the hardest part for me was all the uncertainty and all the waiting and all the 'we'll just have to see when he's born.' trust your gut feelings and remember that the docs aren't always right... to anyone going through this- please feel free to message me anytime!! hope everyone is doing well ~~

turtlemom - 309 days ago.
Cjengo is absolutely correct. I've posted the link before that gives the best statistics. If the vent measurements are below 13mm, there is a 97% chance of 'normal' neural development. If they are 13mm to 15mm, the chance drops to 77%. precious Jude was part of the 3%. What slays me is all these doctors mentioning termination when there is a 97% chance of having a typical child. We were prepared to have a baby with profound disabilities and tx never crossed our minds. But, we also have the resources and support to take care of her. Not all babies will be born perfect, but I would assume you will love them no matter what. If not, God help you.

up north - 310 days ago.
Eyebaby - Yeah you made it WOOOOHHH!!! RKT1n0- Pls look back through the posts and find mine. 27weeks my babies vents measured 12 (left side only) up to 14L 15R . Vents stopped growing @32weeks. Now 18 months and doing great. I find it hard to write that today cause I went shopping and he got insulted when I put him in the cart cause he thought he was going to walk round the store. Screamed so much everyone was staring. I took him out and he wouldnt hold my hand and sat on the floor in protest so I then had to carry him under one arm kicking and screaming whilst pushing the cart to the checkout. I look at him and think wow you are having a totally developmentally appropriate tantrum!!!!and I have to stop for a minute and thank g-d for my miracle child.

cjengo - 310 days ago.
rkt1n0@yahoo.com - Even tho people are posting great and wonderful outcomes, not everyone's is. My sons Vents were 9mm and 10mm. He is severly disabled. When he was born we were told he was going to be perfectly healthy and overcame everything. At 3 months he had a grand mal seizure and we learned otherwise. An MRI caught the massive damage the stroke did to Judes brain (A stroke caused the VM). Turtle mom knows I come on here not to scare people but to show the others side. I am here to educate because I feel the more educated you are the more equipped you are to handle a situation if it arises. I pray that everyone on here has a great outcome but if you don't the more you learn about therapy, what to look for, and having a great support system in line the better you are. You are welcome to come to my blog at www.cjengo.blogspot.com, or email me at jennjennortiz@yahoo.com. I am blunt, I am honest, and I 100% love my little boy. He is the light of my life and has done more good than anyone in my family considered 'normal' ever has

laila10 - 310 days ago.
Hi Eyebaby, Congratulations!!!! I´m very glad to hear these great news about your new born baby. I told you she will be ok and you would tell us very good news. what´s her name? Try to breastfeed her if u can, that will help her a lot. All the best.

partyof5now (Sonya) - 310 days ago.
eyebaby - Congrats on the birth of your lil precious baby girl. I am so glad to hear that she does not have lissencephaly as your doc thought she would & just the VM. She may never have any delays or show any ill side effects & if she does I am sure you guys can overcome it with love & patience...babies are truly a blessing but all these babies on this forum to me all the more special =)

eyebaby - 311 days ago.
BTW, I want to thank all the mothers who have left messages here!!! You were the only ones who understood how I was feeling. Your messages gave me so much hope and strength during my pregnancy. I can say all of us enjoy our babies much more all this experience. As I have said, I dont know what the development of my baby will be but that is not important now.

eyebaby - 311 days ago.
I must leave a msg here eventhough i'm still in the hospital recovering from my cesarean section. If you read previous messages that I posted, you will know how much pain I was in. My story began in my 20 weeks of gestation when the doctor detected bilateral ventriculomegaly of 10 mm. I had amniocentesis which was normal. The doctors at that time suggested termination and I declined. The ventricle size slowly increased to 14 mm at 29 weeks of gestation and out of the blue one of the fetal medicine dr thought my baby may have lissencephaly (In such a case, the child won't be able to walk/talk and will be wheelchair bound for the rest of life) which has the worst prognosis among all ventriculomegaly possible outcomes. I was devastated and cried non stop which led to poor appetite and weight gain of myself. The fetal medicine dr arranged a fetal MRI which I declined. Since 29 weeks, I did not have anymore level II USG coz I didn't want to know the measurement. I had cesarean section (at another hospital) this week and an ultrasound brain was performed on day one which said GROSSLY NORMAL and prominent ventricles only! The dr who suspected lissencephaly even asked her nurse to call me after my delivery to check how my baby was, whether she was admitted to NICU/peadiatrics. (They are so keen at freaking me out!!!!) Now I am holding my lovely baby girl and I cant imagine how I would feel if I had terminated her. I dont know what to say. But I do agree that dr tell you the worst ever prognosis they can think of!! of coz I dont know if my baby's development would be normal or not , now I can holding her in my arm and I dont care! For rkt1n0@yahoo.com, your wife should not terminate coz of her age, it's difficult to conceive. and you can read all the stories here and I think for your case, isolated ventriculomegaly has a good prognosis.

partyof5now (Sonya) - 311 days ago.
rkt1n0@yahoo.com - my docs offered to terminate my son at 29 weeks as well which blew me away & scared us more than anything else could of because we felt if they offered us something so severe this late in the stage then something horrible must be wrong with our son that they werent telling us...My son was diagnosed with mild VM & Colpocephaly but he had no other abnormalities, growing fine, moving fine, blood work clean & Amnio normal...his vent enlargement & brain issues were isolated but unexplainable still to this day. When diagnosed at 29wks his vent measured 14+mm, it slowly corrected itself & decreased in size over the next couple weeks & at 35wks it measured slightly over norm 10mm. At 1day old it still measered slightly enlarged but he has had not ill side effects from it, no delays...even walked by 9mo old, knows a few spoken words & several sign words too...our neurologist advised us he is fine & to go home & love him. We were told his left lateral vent was enlarged & brain loss in that area....told a horrible outcome of the life my son would lead due to his diagnosis if he even survived birth...We proceed with pregnancy against our docs warnings & my son is now 17mo old, perfectly healthy & such a blessing...I think of our choice we made to have hope in our son that he would defy the odds our doc gave him, now 17mo's later I look at him & still have a huge wave of emotion hit me daily at the thought that we came so close to not being blessed by this gourgeous little mans contagious laugh & heart warmng smile if we had listened to our doc & termed him. I have learned docs can be wrong & they are reguired to tell worst case scenerios. If I was tell my neurologist that your docs offered to term this late due to 13mm vents he would come unglued like he did when we told him what we went thru while pregnanct with my son & what my doc offered us at 29wks...he is currently following my specialist that offered late term of my son due our diagnosis of a possible medical malpratice. My story is posted on my profile in a couple blogs along our roller coaster ride of a pregnancy if you would like to read...it may give you & your wife hope for your little one. I know it is a scary time but from what I have seen from my personal life as well as several posts on this forum of LO's with 10-15mm of vents that are isolated everything turns out to be just fine. My best wishes to you, your wife & your LO on the way...it is a hard choice, follow your hearts & your wifes mommy insticts because she can feel your LO 's normal movements telling her everything will be fine...its the one thing I held on to till the birth of my son.

turtlemom - 311 days ago.
Terminate a 27 week baby????? Are you INSANE?????? That is the craziest thing I have ever heard of. I am pro choice but there would be no way I could tx a 27 weeker (I probably wouldn't ever tx anyway but at least I think you should be able to decide for yourself). A 27 weeker is very viable. That baby would probably live if delivered. So, you would be killing a baby not a fetus. Shame on whomever told you this was a good idea. I imagine you are outside of the United States where the government pays for healthcare. Apparently they are either ignorant or just don't want possibility (very low possibility) of having to pay for medical care later (shunt surgery is more expensive than abortion). Asinine.

rkt1n0@yahoo.com - 311 days ago.
Hi, my wife who is 27 week pregnant was told that baby has Venticulomegaly. And both lateral Ventricles are dilated to 13mm. We did the Fetus MRI which also indicated the same result. MRI also indicated that the there are not other problem seen in the brain or in growth so far. Also the Chromosome Test came back clean. I am very scared and not sure what to do? My wife is 40 years old and one tube is already removed 16 years ago. Not sure to keep the pregnancy or to terminate. Is anyone had similar issue and how was the outcomes?

deedee26 - 312 days ago.
Hi turtlemum I think I wrote the 14 mm wrong is says on my notes that one is 12 mm an the other one is 18 mm for the second scan because the first one they gave me was 10mm and 16 mm I guess that's too above 15 right? But they still say is moderate. Am trying to be very positive my family and friends are also been positive an that's helping too but there are times when u just wanna sit down and cry cos u do t want ur baby to be sick u just want ur baby to be healthy and be ok. This will be the second time that I won't be able to take my baby home traight away if she is not ok and have to go back to the nicu an that's what hurts the most u know!although with my son it was only for two weeks cos he didn't have enough sugar on his blood an then his stomach swelled up cos docotors tried to force feed him milk they said it was something also but one as a mother knows that they are just trying to cover themselves cos he was fine when he was born only that one thing was wrong with him the next day he was on antibiotics and send for scans for his belly. Sorry for the long story am just really scared of the outcome of this pregnancy an I have to wait a long week to find out whether is the same or is gone worse an the nerves are just killing me!!! Thanks for ur support though am so glad I found this forum!!

turtlemom - 312 days ago.
Hi deedee, it is very sad that your practitioners are so pessimistic. Your vent measurements are still in the low to moderate category. There is still a great chance of a very normal outcome. My daughter was diagnosed with severe hydro at 18 weeks and is doing really well for such a severe case. Try to keep your chin up and don't let the doctors get you down. It us a shame that they are really ill informed/ignorant about outcomes with mild cases. If you read far enough back I've found a citation that states vent measurements below 15 but above 13 wind up with a 77% chance of normal neural development. If they are less than 13, the chances jumps to 97%!

deedee26 - 312 days ago.
Sonya Thanks so much for the words of encouragement!! I haven't given up the hope that my baby will be ok!! I think doctors just like to scare u most of the time!! it's just scary but like u said whatever happens happens she is still going to be loved and cherish an for us she will always be our blessing!

partyof5now (Sonya) - 312 days ago.
deedee26 - try to stay positive, I know it is hard & the worry for your little one is great. The docs offering termination with brain issues seems to be the norm on here, it makes me sad for all the parents out there that took their doctors word as gods word, got so scared by what their docs told them & terminated perhaps a very healthy baby...makes me tear up just thinking about it. My docs offered us the same thing on several occassions even in the 3rd trimester & thankfully we held on for hope for our child, he is 17mo now...healthy & such a blessing! His left lateral vent at 14+mm at 28/29wks & told brain loss in the area on MRI, the vent slowly decreased on each scan after till it measured just over normal 10mm at 35wks. At 1day old he showed no brain loss & a slightly enlarged vent for no reason..its just the way he was made. He shows no sign of delay & I believe he is going to do just fine in school when the time comes & if he does have a delay found at that time then we will still love him 100% no matter what. The docs are required to tell you the worst scenerio to cover their butts like they did in our case but they were completely wrong about my son...I am thankfull everyday for that! Try to stay possitive, trust in your mothers heart & believe in your baby...as I was once told on here =) This forum helped me so much during our waiting time, so greatfull to all the moms on here that shared their stories & gave me hope when I so needed it. Please keep us updated on your little one

deedee26 - 313 days ago.
WeFound out with baby premier aswell an then we went to get another scan at the hospital and it was higher, that's why I think the doctor said it's not looking good I just hope that they don't keep me bothering about having a termination an also becUse I went to the appointment on my own they wanted my hubby in the next appointment. But for me they didn't even offer me an MRI scan just another scan an then to speak to the paediatric an the suspense is killing me I have to wait another whole week an am just so tired of it and it's only the beggining of a long journey!

mommy2E - 313 days ago.
Hi DeeDee, I am also new to the site but visit often as I find the sharing on here to be VERY beneficial and assuring at the times when I am freaking out! I have found that the measurements seem to vary depending on the place where they are performed. We had a first measurement on 10mm and then were sent to a facility with premier ultrasound equipment which measured them at 10.8 and 11. A month later they had increased to almost 11 and 15mm. We were sent for a MRI and that showed that they were both measuring slightly over 10mm. Anyone else find this variance?

deedee26 - 314 days ago.
Hi! Am new here been trying to figure out how to leave a message without reading the instructions!! I am 28w3d into my pregnancy when I had my 20 weeks scan doctors said everything was fine... At 27 weeks went for a 4d scan an was told that my babys ventricules are enlarge they are bilateral still don't know wat that mean. Was told to call my midwife who told me that I should call the labour ward so they can send me to the fetal unit. Went there on Monday an was told to come back Wednesday an they will do an scan the first time it was 10mm an the second scan is 12mm and 14mm was told its still moderate had a blood test now waiting for the results for two weeks time was looking about ventriculomegaly an that's how I found this site an the stories here are amazing an has given me a bit of hope I was also told that if it gets worse baby would be sick an all that an was offer a temination but I don't think I could ever go through with it. I am extremely scared of what might happen to my baby girl,they told me that apart from that everything also is fine she is growing fine an there is not other problems just that.I did all the crying an whenever I talk to my mum I still cry but somehow deep down I feel something is telling me it's gonna be alright an it won't let me accept that something might be wrong when she is born or mayb it's just hasn't sink in yet I don't know which one it is but am still hopeful mayb until the next scan it might change but am still gonna try an remain hopeful like many mothers here have said God would never give u anything that u won't be able to handle!!

emelcivan@ymail.com - 316 days ago.
So happy for you mommabythesea! Gives me much more strength. I have another appointment on Saturday. Worried&Excited.

mommabythesea - 316 days ago.
just wanted to update... apparently our original measurements were a 9 and we were sent to a specialist. met with the mfm today and measurements were a 7-8! so very happy that everything was normal today. and i wish i had called and asked ahead of time what our measurements were so i wouldn't have been stressing as much! thank you ladies for all your support!