Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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timmpierce@gmail.com - 17 days ago.
Well, my son was born 24 hours ago. He was delivered naturally one day before his due date, weighed 8lb 3oz and scored 9 on his APGAR test! I just can't believe how perfect and healthy he looks. He's going to have an ultrasound in 2 days to see what the situation is with his vents, but as far as I have seen he is alert, responsive and bright. I have high hopes for his future! I'll post again as things unfold.

cabs88 - 18 days ago.
Here is a link to the UK charity ARC (Antenatal Results and Choices) that the hospital provided me,and to other parents that 'offer parents specialised support for as long as it is needed when they receive a worrying screening result or when a fetal anomaly is diagnosed in their unborn baby, to enable them to make decisions which are appropriate to their individual circumstances' (including of course Ventriculomegaly). http://www.arc-uk.org/ Their website says; 'ARC offers non-directive information and support to parents who are: Making decisions before, during and after the prenatal testing process. Told that their unborn baby has an abnormality. Making difficult decisions about continuing a pregnancy. Making difficult decisions about ending a pregnancy. Coping with complex and painful issues after making a decision, including bereavement'. They are a UK based charity, but I'm hoping they will help you even if you live abroad (although hopefully I'm sure your own individual countries have similar charities, please do look for them). They offer proffesional advice and support, and also 'works closely with health care professionals to help them provide the best possible care in sensitive circumstances'. They are really nice people and are there to simply offer advice and help for you after your baby's results.

brad-and-amy - 18 days ago.
All I can say about the exchange is that about 18 months ago, I met Turtlemom here and she helped me have hope for a little bundle of joy that is now a one year old sleeping beside me. So so so thankful for her encouragement not to terminate because my daughter has made me a better person and made my entire family and most of my friends better people. Don't know where I'd be without Turtlemom. She may come across as sarcastic but that just part of her charm in my opinion. Keep doing what you're doing Turtlemom. The people you meet here will either be leaning to terminate or keep before they get here. You're going to be a hero to those preferring to keep and a villain to those looking for back-up on their decision to abort.

LDMusgrave - 18 days ago.
You aren't leaving me to this board by myself, woman! *breaks baton in half and hands her one piece*

turtlemom - 18 days ago.
Baton passed.

LDMusgrave - 18 days ago.
Turtlemom is a badass.

turtlemom - 18 days ago.
I just went through our entire exchange on bc and cannot find ONE offensive comment. I told you I didn't want to introduce you to the Hydrocephalus group on FB unless you had a hydro diagnosis (this was before I learned about your brother) and pointed you here. I even said I could introduce you to a friend Jen who had similar vent measurements. Hmmmm, sounds like I bent over backwards to get you connected with people in a similar situation. And, I do believe that most of the 97% of people with babies born 'normal' after vm forget to come back and post. That is why I don't. And, I love it when those who follow up!! But, it doesn't happen nearly enough. My goal here is to make sure people with true VM are informed. I don't think that happens.

turtlemom - 19 days ago.
Quick question- How do you know about this site??? Oh ya, it's because I sent you here!!! Yes, that's right, you sent me a thank you message and I directed you to this site bc it was more appropriate for your needs. You are welcome.

LDMusgrave - 19 days ago.
Many children with hydrocephalus may not have this outcome, but 97% of the children with isolated mild fetal ventriculomegaly do have this outcome.

turtlemom - 19 days ago.
kjh6b - Sorry abou that. I guess I need to pass the baton to Lindsey. ;-) I guess I've gotten jaded being around here for almost 4 years. We didn't have any mention of termination until just a bit ago. I know many of these little babies have many issues and their quality of life would be complicated or none, but it is still a difficult convo considering this is a VM board, not a termination board. I guess that is where it stems from. Also, I've been doing this a LONG time. Much longer than your 16 days. Your baby is fine. Mine took a trip to the ER two weeks ago for a possible shunt malfunction. She is typically fine, but she does have epilepsy, so we never know when that next seizure is going to come. I just want to make sure parents are informed. My stats are honest. 97% of the babies that are around here will be fine.

LDMusgrave - 19 days ago.
And here is an updated pic of my LO.. she was having green beans and pasta for dinner the other night... :) http://imageshack.us/photo/my-images/38/32646530572259208531569.jpg/

LDMusgrave - 19 days ago.
While I do realize that some situations don't always turn out for the best, I must continue to share my story as well. The sweet angels who have been lost are deeply in my prayers. I hope for our story to be a beacon of hope for expecting mommies. My daughter had what appeared to be extensive brain damage. In this picture I am going to paste a link to, you will see the MRI in the first picture... both 'hemispheres' of brain are squashed to the sides of her skull whist 10 centimeters of fluid fill up the rest. Then in the next two pictures, you will see CT scans, so that's why they look different. You can see how her brain is 'fluffing' back out to where it should be and continues to do so. She just turned 13 months old and she's such a joy to me... we were told by doctors she should be terminated at 20 weeks, because she would have no quality of life. That she'd be a 'vegetable,' their words, not mine. I chase her around all day to get her out of things. She loves to plunder like tots do. I hope this gives some hope... if you'd like to reach me (with a diagnosis of hydrocephalus) please ask me for my Facebook contact info. http://imageshack.us/photo/my-images/267/scanswithpics.jpg/

kjh6b@hscmail.mcc.virginia.edu - 19 days ago.
cabs88 - Bless you for sharing your story. My heart goes out to you and your family at this difficult time. Please know that your decision is yours and yours alone and there is no 'wrong' decision - only hard ones that are very personal and individualized to each situation. I think it's important for all of us to remember that this should be a forum for mothers to come together and share their stories and information without judgement and receive support. Thank you for your link - I find all info posted on these forums helpfull. My docs warned me about these online sites also as the information received is usually coming from those without medical backgrounds. Their words were 'if it starts to add stress to your already stressfull situation it's time to stop.' I found that to be some pretty good advice and don't obsess over 'google' and these forums as much as I did in the beginning. I'll be thinking of you next week and beyond. I hope all goes well with your procedure and will keep you, your family, and your baby in my prayers.

cabs88 - 19 days ago.
Yes, we read through every comment here. I just thought it would help to put some links in for others, in addition to whatever research people may have already done, just to help with additional information for others if they want it. I'm sorry your daughter had evident brain damage, and it's a shame you don't seem to like anyone else trying to help with a few extra links, and the 'count them 1234 etc' comment I don't understand as it seems quite sarcastic - my apologies if this was not your intention, and I have offended you. My aim was purely just to provide another experience, and some further information, and I'm not sure why this was wrong? Our termination is due to go through next week, so currently we are trying to get through this difficult, horrible experience. Please don't take offence that someone else tried to help with some more links, and a different opinion. For us, we just wanted to do lots of research, and amalgamated research papers helped us alot. If half a brain is missing, which we saw on the scan (it wasn't just told to us, you could see it all missing, and crushed by the extra fluid), for us, we diidn't want to prolong the pain for the fetus - It wasn't about us. But that was just what we decided, of course everyone is different. My father's life support machine had to be turned off because he was brain dead - that wouldn't have happened had he had a chance in life to heal in his body, but he was already to damaged in his head. Similarly, we would not be taking this decision to terminate had we not seen that scan with the mashed in side of the brain, as a lot of VM research appears to have a positive outcome and we wanted to take that chance to continue, had it been there. I hope that people coming here for help can take all links and read them with an open mind, and judge for themselves how they can proceed and not get bogged down in politics, and people's opinions of what they think others sould or shouldn't do. That was why I was concerned about coming to a board in the first place. My hope as well is that people in such awful positions of having a pregnancy complicated by VM have a better situation than ours - in most cases, research does seem to suggest that mild VM does have a positive outcome in a large percentage of cases depending on if there are any other factors. The study contributor's research however is noted that it is only done in babies and not much is available that goes further into adulthood to see if there are further complications in learning delay etc, but research does seem to currently be positive. Best of luck to everyone who has found themselves in this frightening, horrible situation, and I wish you all the very best for your babies.

kjh6b@hscmail.mcc.virginia.edu - 19 days ago.
Samantha - I have heard of delaying cutting the umbilical cord - saw it on the show 'Sister Wives' of all places - but honestly it didn't even cross my mind to do this until you mentioned it in your comment. Thank you for jogging my memory as this is something I think I'm going to do over here in the US when I deliver. I have also been looking into banking my sons cord blood in the event that his current condition of isolated mild fetal ventriculomegaly (left lateral ventricle currently measuring at 11.9mm) worsens or he has muscle tone issues that arrise after birth. I was told by the neurologist if there was brain loss (one of the possibilities) the area of the brain that was affected controls muscle tone and any impairment would be with muscle tone in his right leg - which we would see around 6-9 months. I'm looking at CBR to bank his cord blood. It seems to have a lot of the things they tell you to look for in a cord blood bank - FDA approved - high cell recovery rate - AABB accredited - secure location in Tucson AZ. Wondering if anybody has any experience dealing with this bank or recommends another?

turtlemom - 19 days ago.
Samantha, I don't know about the availability of cord blood storage in the UK. You could contact Cord Blood Registry in the US to see if you can store here to see how expensive it might be. It is just an option to have it re-infused later to help with brain damage. I don't know a lot about delayed clamping. If you can't do storage, I'd do that for sure!

turtlemom - 19 days ago.
Hi cabs, Actually, the site I normally point people to is this one - http://www.obfocus.com/questions/qanda10.htm, which has 12 (count them, 1,2,3,4,5,6,7,8,9,10,11,12) peer reviewed souces. This site goes through the fact that, 'Isolated ventriculomegaly greater than or equal to 12 mm is associated with normal neurodevelopment in approximately 77% of cases. Whereas isolated ventriculomegaly of less than 12 mm is associated with normal neurodevelopment in 97% of cases'. I'm sorry you terminated your baby. You didn't have isolated VM so this statement didn't apply. But, I have been here for almost 4 years now and can assure you that these stats are completely true by the numbers of mothers who post on this board. 3% turn out with Hydro or serious complications, and most turn out perfectly fine. And, for the record, it was very evident that my daughter had massive amounts of 'brain damage' at 20 weeks, too.

samanthajane107 - 20 days ago.
Hi Guys, thanks for your messages. I am in UK & doesn't seem to be much here relating to cord blood storage etc. I have read that if you don't cut the cord at delivery & deliver placenta naturally that allows the baby to absorb all the cord blood & stem cells which is something I was planning on doing anyway before all this, although don't know if this is same thing? I read Parkers story Turtlemom and she is so gorgeous! Even though I know our situation is different it still gave me hope I made me realise that we will love and cherish our baby no matter what outcome we have to deal with.

cabs88 - 20 days ago.
This webpage also has a lot of links to more VM information. Keep scrolling down - it has Doctor recommended info, as well as further websites. http://www.squidoo.com/ventriculomegaly-info

cabs88 - 20 days ago.
Here is a paper that amalgamates research on mild (up to 15) and isolated VM from differnet studies - http://www.image-learning.com.ar/comunidadesp/file/212-224%20VENTRICULOMEGALIA%20AISLADA.pdf It's a good study as it shows that there is no set rule or percentage of what will happen in cases of mild and isolated VM. My fetus was diagnosed with a number of problems, including VM, at 20 weeks. We had to wait a couple of days until the more indepth ultrasound, which was hard to do, wondering what was going on with our baby, but the second scan wasn't good at all and confirmed what the sonographer had told us she'd found. The VM, whilst catorgorised as 'mild' at 13.2 bilateral, had already advanced on the left side. The fetus's left hempishpere on the 2nd scan showed it was all crumpled in like a mashed in boiled egg, with the left hemishpere lower, far smaller and crished in than the right. Had that not been there, we would've had hope even with non-existant amniotic fluid and the bowel and kidney problems, but not with such a mashed-in little brain. The fetus was so small, and we decided we couldn't force it to live when it was already so obviously damaged. The NHS staff were amazing - I am eternally grateful for the UK's free health service. At no point did they tell us 'it's best to terminate', nor did they pressurise us at all for anything, they were just honest about what the scan showed, what it was likely to mean for the fetus if we wanted to continue with the pregnancy, and what the chances were based on past examples of other babies having the same difficulties. Take medical advice as it comes, ask as many questions as you possibly can, do the research, but use your own judgement as what you want to do. Don't let ANYONE make you feel pressurised, or guilty, or anything like that. They are not you, they are not your baby, and they are not God, to judge you as they see fit. I came to this forum, as well as done heaps of research into VM, before the appointment to see other women's experiences. We had decided that if it hadn't advanced, and if there weren't additional complications, and if the brain was still looking viable, we could continue, it's just that in this case the little fetus just hadn't grown correctly at all and already had evident brain damage at only 20 weeks.This of course doesn't always happen with VM, it's just unlucky it happened to us and we decided we couldn't force it to try and live when half it's brain was already crushed in. It seems from all the amalgamated results that the later on in the pregnancy, the milder the dilation and if it's isolated, the more chance the fetus has. I would say though just don't rely on the results of one single study from one hospital. The brain is still very much a mystery and as such solid outcomes are very difficult to predict.

cjengo - 22 days ago.
SamanthaJane - Jude's diagnosis was closed lipped bilateral schizencephaly caused by a massive bilateral stroke in utero.

turtlemom - 23 days ago.
Hi Samanthajane, Parker has open-lipped bi-lateral Schiz, which actually has a worse prognosis. I do belong to a Schiz group on FB if you want to meet other moms there. Let me know. Parker os not the atypical Schiz-kid. Most do have disabilities. We believe her hydro caused the Schiz therefore she doesn't have all of the atypical symptoms. But, the biggest one is seizures. Also, are you in the US??? I highly recommend storing cord blood. Read my page about what we did for my daughter.

katieandiggy@tiscali.co.uk - 23 days ago.
Samantha- sorry you didn't get a definitive answer, I think that's the hardest thing just not knowing. I have been reading lots and lots on all different brain conditions, I found this website http://www.medlink.com topic on Schizencephaly really good. Although I guess you never know anything 100% they say that small unilateral closed lip schizencephaly often has very mild symptoms.

samanthajane107 - 23 days ago.
We went to see consultant begining of the week who told us that report from MRI was pretty inconclusive and he was sitting on the fence somewhat, great! He said our baby could have nondular hetretopia, could have uniltaeral closed lip schizencephaly or could be none of the above!! We are going back for ANOTHER Mri in few weeks time so still no wiser although one thing is for sure, no way we are even considering termination (which he said was an option later on if do diagnose schizencephaly) especially not when they don't seem to be sure of anything, if even they do eventually decide to diagnose one of the above they won't be able to give us any definate outcomes. Just don't think i could go through with that at such a late stage when there's always possibility things will turn out fine. We have decided to remain positive and put this to the back of our minds and trying to look forward to our baby's arrival.

LDMusgrave - 26 days ago.
mylsdeniz, I cried reading your feelings in this post.