Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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sherbear - 69 days ago.
HI

Rcdierks@gmail.com - 70 days ago.
I would like to piggy back on what 'cheerdizzy ' said. Like so many others, this forum was my education and saving grace for the most difficult time of my life. I have been a silent participant reading every post as far back as could go, now I feel I need to document my experience to serve as encouragement and also a precaution to recently diagnosed families. At 15 weeks my OB said my routine U/S showed the baby had 'water on the brain.' I had no idea what that meant. Within 2 hours my husband and I were sent over to the hospital's perinatologist. It was there the peri diagnosed our 15 week baby boy with hydrocephalus and club feet. We were counseled that it might be spina bifida, but the spine 'looked good.' She told us 3 things: 1.) This condition was not going to go away. 2.) The baby would need a shunt AND would need shunt surgery every time the baby grew to accommodate the tube length. 3.) She told us since we were only 15 weeks along we had 'lots of time to decide to terminate.' Of course we were devastated. Googling hydrocephalus and a club feet is a very scary que. We did the amnio and other genetic tests... after 3 agonizing weeks they both came back normal. It was then we finally saw a top nurologist and he looked over our file. With our heads hung low he asked us what the big deal is! He looked over everything and said that our baby's ventricals were only at 9mm (still in the normal range) and club feet could no way be determined at a 15 week scan, as they are still developing.) It was a month into our original diagnosis that we finally learned the term ventricularomegaly. We couldn't believe what he just told us. We had a fetal MRI and it also was normal...we took the MRI pictures to a second top nurologist he also confirmed everything looked normal. As the pregnancy continued our baby's 'club feet' were never seen again and the ventricals reached a high of 11mm, but resolved to 8mm at 32 weeks. We literally got to wake up from a nightmare. Sometimes babies have slightly larger ventricals!! Today my baby is a healthy, active and alert 4 month old. I hope families that are recently diagnosed get second and third opinions especially from a nurologist with an MRI. I cringe and cry thinking about how adamant and inaccurate our doctors original diagnosis was. Why did she use hydrocephalus to describe ventricals of 9mm? Why did she say it couldn't resolve? Why did she say the baby would need shunt surgery EVERY time he grew? There are doctors out there even in top hospitals in major cities that have little to no experience with ventricularomegaly. Please, please get second and third opinions if they try to push the worst on you and your baby!

CJENGO - 70 days ago.
ajslot@hotmail.com. I think the MRI will be your best test for finding out what is going on. That's where we found out Jude had a stroke. Our doctors further down the line told us Jude was going to be 100% normal, but it turns out the MRI doctor was the one that was right. They can see all the parts of the brain that a sonogram machine just cannot read. I will pray you get good positive results. Many hugs to you I know this is a hard time, but it's best not to worry until you know results. I know it's hard but the stress is hard on the baby. I was so stressed and looking back I wish I had relaxed.

cheerdizzy883 - 70 days ago.
Hello All, I wanted to give an update on my story after being told a month ago that I should consider an abortion because my baby’s ventricles were slightly enlarged. I went to my second appointment yesterday and the ventricles measured NORMAL! Thankfully I found this forum and got a second opinion before making any rash decisions. The doctor yesterday spent a very long time looking closely and measuring and she said there is no indicators that ANYTHING was enlarged. She said that sometimes these slight enlargements will fix themselves, but she also said that sometimes it’s just a bad angle of the baby’s head and the ventricles can appear to be larger than they are. I was of course thrilled to hear the news that my baby was ok after a month of living in torture, but I was furious that I was not told that information from the previous doctor! How can they know that sometimes it’s just a bad angle that they are seeing and not tell you….more importantly, how can they know that it could be just a bad angle and even mention the word ABORTION to you!!!!!!! I am sickened to think of how many people have followed the advice of these doctors and aborted a perfectly healthy baby. If you have been told to consider your options, including abortion please don’t do anything without a second or even third opinion. Trust me I know how hard it is, just sitting and worrying….but please be strong for your baby and fight for them tooth and nail. Prayers and hugs to anyone going through this.

ajslot@hotmail.com - 70 days ago.
Hi Everyone, It's been inspirational reading everyone's story and knowing I am not alone with this diagnosis. At 20 weeks my baby was diagnosed with borderline right side ventriculomegaly at 9.5mm. My doctor wanted to watch it and we went back at 24 weeks and found the fluid levels increased to 10.7. It was devastating. My doctor thinks this is an isolated finding, from which I find some solace. He is also against amnio at this point saying the risks outweigh the benefits. Being in the medical field I know you can never really 'know' what's going on from routine scans. I'm beyond upset and a nervous wreck. My biggest concern is that the levels are increasing and I can find little information about increasing fluid levels. I am waiting for the TORCH test results and an appointment at Children's Hospital in DC for an MRI. I try to remain positive, but am having a hard time taking it all in. It seems that well meant advice from family and friends is becoming overwhelming (to the point where I stopped taking phone calls and checking emails and texts) especially my parents suggestion of termination - even before we have results of the testing. Thanks to everyone for sharing their experiences and if you have any resources or advice I'm all ears (or rather eyes.).

ajslot@hotmail.com - 71 days ago.
Test

c.hay811@btinternet.com - 72 days ago.
Hi, I feel slightly embarrassed with the slightly erratic nature of my previous post! I have however had to time to reflect on the news that we have been given and I am now able to approach our situation more positively. I did not respond very well to the news for a variety of reasons. The main thing is that we have had a clouple of results back already that have not been able to detect any chromosone or genetic conditions. I also have a scan on Wed to measure the vents again and an MRI on Friday. In the meantime I will maintain a positive attitude. I have to say I am truly inspired by some of the courageous people on this site, particularly those who are regular visitors who contribut a wealth of knowledge. I have learned more from reading individual stories on this site than any Doctor could have told me. It sounds as though there are some amazing babies/children out there and also some truly amazing parents too. Thank you again x

LDMusgrave - 73 days ago.
Wow, turtle. Wow. The way you put that is just amazing.

turtlemom - 74 days ago.
Who wouldn't want to raise their daughter to get a BA in Sociology and then a Masters from Cornell. Work for Price Waterhouse, then become a CEO of a small company and sell it to a Fortune 100 company for a huge profit. Marry an Astronaut, get elected to the US House of Representatives, all to get shot in the head and get Hydrocephalus. You can raise your kids but you can't control everything. I wonder how Gabby Giffords mother felt.

two-on-board - 74 days ago.
The sad fact of the matter is that no one can ever to certain, with their hands on their hearts, that their baby will be 100% normal, anomolies or not. There are so many babies born, every day, with issues that are unknown, and so many babies that are born, every day, who develop issues over time, I remember feeling that when this happened to me, despite my positive outcome, that what would I do if this had happened or something happened to one of my apparently normal 5 other children?

CJENGO - 75 days ago.
9mm and 10mm are considered on the 'high end' of normal. I too have educated myself well. 1 in every 4000 babies will suffer a stroke in utero. That is greater than the chances for Spina Bifida. If stroke is the case then the increased vents are due to fluid filling in the gaps where the brain has not developed. Strokes in babies and in children are classified as one of the top ten deadly issues in children today. So we should all be aware of the signs. Many times a baby can suffer a stroke in utero and we won't know until they suffer from learning disabilities in school. Jude's case was extreme and was a mystery until he was 3 months old. More often than not there is no cause for the stroke, but there are some underlying issues that have been identified like factor V Leiden in the mother. The reason I post Jude's case on here is to help educated others. More often than not the case will be normal, but if your pregnancy is not than it's better to be educated so you know which roads to take. Who to call, who to approach, and how to handle your emotional state. Jude has taught us so much and still does everyday.

turtlemom - 75 days ago.
I don't think anyone deleted their account. I've seen where posts go away bc they don't create an actual account here they just post with an email address. I'm pretty sure it wasn't intentional. As for precious Jude, I always say that if vent measurements are under 12mm, there is a 97%chance of normal neural development. If you click on the page before this one, you'll see where I made mention to a very precious boy that falls into the 3%. This is Jude. I'm sure there are cases where there is a stroke in utero where there are no symptoms, including increased vent measurements. I love both Jude & Marley! Two vastly different ends of the vent measurement spectrum, yet two awesome kids!

LDMusgrave - 76 days ago.
Isn't 9mm and 10 mm considered a 'normal' range for vent sizes, though? There was really no big thing, I just noticed a distraught poster saying she was leaving and her child's vents were 10 mm.

CJENGO - 76 days ago.
Also just FYI - I haven't been on in a long time. Turtlemom and I are good friends. She is the positive one with the great outcome. I am the one with the cold hard truth of the other side. I am always very supportive but also here for anyone that would like to know more about what happens IF the pregnancy does not have a positive outcome. Although, let me stress that my baby Jude is my world and I love him just the way he is. He has done more in this life than I could ever hope to. Also, Jude did not have hydrocephaly. His vents were enlarged due to fluid filling in parts of the brain that had not formed. I am here for anyone that ever needs to talk jennjennortiz@yahoo.com. Remember to ask your doctors as many questions as you can. The more educated you are the better your life and your baby's life will be. God Bless!

CJENGO - 76 days ago.
@ldmusgrave ~ I am coming in on the end of this. Although let me just say that Jude's vents were 9 and 10 and he turned out to be profoundly disabled. The vents are sometimes not a good indicator of the underlying issue.

LDMusgrave - 76 days ago.
I'm not sure who it was who got so upset and deleted their account/comments after posting how upset and distraught she was with 10 mm ventricles, but I just don't get it, because 10 mm is normal ventricle size.

turtlemom - 76 days ago.
To mommy23 & c.hay, Obviously think pink has learned a lot in her time here :-). I'm proud! With vent measurements 13mm or less, there is a 77% chance of normal neural development. If they are 12mm or less, the rate increases to 97%. The chance of both of your babies being completely normal is great. And, the further along you are, the harder it is to measure vents. If it makes you feel better, by the time I was 27 weeks preggo, my daughters vents were so large, they could no longer measure them (probably 40-50mm if they were to guess). No offense (I know that anytime anyone says that usually something offensive follows...) but until you have another scan that shows an increase in vent measurements, you have nothing to worry about. Buck up, buckaroos! I totally mean this in the most supportive way possible, but I really don't think you have any problems.

mommy23soon - 77 days ago.
c.hay - I know exactly what you are going through right now, I am currently 28 weeks with twins and we were told a week ago that one of the babies has been diagnosed with isolated venticulomagaly, with ventricles measuring 12-13mm. I was completely shocked and unable to deal with the news for about 24hours (I don't know if it was pregnancy hormones or what...but I seriously fell to pieces and was not capable of processing the news). We had a specialist appointment last week and have made the decision to continue to monitor the ventricles with ultrasound and I had some blood work done (TORCH) to rule out infection, but we have made the decision not to have the MRI done or an amnio. No matter what the outcome - I will be having these babies in a few weeks, right now my biggest hope is that the ventricles stay relatively the same size or decrease in size. If they continue to grow - I guess I will just have to hope for the best, and I will deal with that news if it happens (last week I kept thinking 'worst case' scenario - I'm trying my best right now to stay positive and focusing on best case scenario). I have been reading through these boards and feel like I have come to a better place regarding my feelings and our current diagnosis - I'm trying to stay positive, there are SO many good stories with positive outcomes on here and they have given me hope and put me more at ease.

c.hay811@btinternet.com - 77 days ago.
Thank you Thinkpink2010 for your response. I have been reading a lot of older posts in here, and you are absolutely right. I think I am still in the 'shock' stage, but my strength will come from my determination to love our baby and be a great mum. Thank you again, your words have been very comforting. I will keep my fingers and everything else crossed and await the results. x

thinkpink2010 - 77 days ago.
c.hay- I think we can all relate when you talk about being petrified. It is so scary when you don't know what to expect and at one point or other everyone on this forum was (is) in that boat. First off, 12-13mm is not very bad... so you should look at that as a positive thing. I really think that the MRI next week will be able to provide answers to some of your questions. Don't feel guilty for how you are feeling. Everything runs through your mind when faced with the unknown and it doesn't mean ANYTHING.... just that you are human. You love your LO and (like everyone) want the world for him/her. The thing that I think the mothers on this page have learned is that, your love is what is MOST important.... Challenges will happen to everyone, this is just another challenge. It will work out. You are strong enough and have enough love in you that you will be fine. I want to say though, if you read back through the posts you will find MANY mothers who go on to have perfectly healthy kiddos.... Don't let yourself get to wrapped up in 'what might be.' Prayers sent your way!!!

c.hay811@btinternet.com - 77 days ago.
Hi, I am a mum to an 8 year old daughter and my husband and) I are expecting our 2nd baby in February 2012. (I am 27 weeks today Unfortunately last Monday we attended a scan to look for any possible heart defects (which have previously been present in my extended family). Luckily everything appeared to be okay with the functioning of the heart, however we soon realised that the sonographer was spending a long time looking at our babies brain. Eventually after we questionned her she confimed that there was a problem. Subsequently, our baby has been diagnosed with venticulomagaly as her ventricles appear to be 12-13mm. We have spent the last week or so having several tests which include a blood test to rule out any viral infections through me, an amniocentesis, and cordocentesis. We are also due for an MRI scan next week. We are now anxiously awaiting the results from the tests that we have had so far. What is concerning me at the moment (amongst the obvious) is that I am a complete mess right now and uncharachteristically feeling depressed. I just cant seem to get it together. I know that the outcome could be really positive ane without knowing whether the VM is isolated or not, or whether there are any other anomolies we are currenlty in a positive position. However I am so scared of the outcome. I am petrified that I can not be what our daughter needs. Ironically I work with disabled children and so have first hand experience with how difficult and challenging life could be for our little one. I am absolutely petrified, and even though I am usually a very strong person I am serioulsy concerned that I will not cope. I love my baby more than anything which is why I also feel very guilty feeling so weak. There are some very strong women on this forum and I feel very inadequate reading some of the stories. I would love the opportunity to talk to other mums who are experiencing the same thing.

LDMusgrave - 79 days ago.
10 mm is normal, sweety.

katieandiggy@tiscali.co.uk - 81 days ago.
What an absolute little treasure! She is doing AMAZING! Just watching some of your other videos of her crawling. It really gives me great hope seeing them. So glad I found this board x

LDMusgrave - 82 days ago.
I stop in here to update every now and then and to give some hope... I found this board when I was 20 wks pregnant and my daughter's ventricles measured 24 mm each at that time. By the time she was born, her ventricles measured 70 mm and 32 mm. I realize that my daughter's development is not a 'typical' result per the statistics.... but I have never lost hope. We got the termination speech at 20 wks as many of us do.... and I can't imagine life without my precious girl. This is her now, at 'age appropriate' development: http://www.youtube.com/watch?v=21csBeBbcjA

katieandiggy@tiscali.co.uk - 82 days ago.
I'm due 25th December, but he is measuring large so I'm seeing my consultant at 37 weeks to talk about delivery. I think lots of babies are born with slightly larger ventricles and we probably know nothing about it! Providing the fluid doesn't increase, and there are no other problems then I've read lots of stories on here of perfectly normal children. My torch came back negative which I expected, I had a cvs in first trimester as my down syndrome result was 1/115, again that was normal. The baby also had a detailed cardio scan at Kings College hospital and again that was normal, so my consultant has diagnosed isolated mild ventriculomegly. She said there is a 90% chance he will be fine 10% he may have developmental problems. They can never give a firm answer as nobody knows until the baby is born.