Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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turtlemom - 20 hours ago.
It looks like all the profiles (including the details regarding Parker & her Hydro journey) have disappeared. So, I had copied her info and started a very small blog - www.theturtlemom.wordpress.com.

twinmomk - 2 days ago.
I think I read every post on this board during my pregnancy. Although I never posted anything at the time I made myself a promise that I would when I had some news to share. I’m hoping that maybe our story will help someone else the way the other stories chronicled here helped me after our diagnosis. We conceived through IVF and after our fertility struggles we were thrilled to learn we were expecting twin girls. My husband and I live in a major US city and are fortunate enough to have access to some of the best medical care in the country. Obviously, we wanted to take every precaution to insure the safe arrival our little girls so I began seeing the high risk obstetricians group very regularly. Everything was fine until 22 weeks along. During a routine ultrasound they found that the ventricles were on the high side of normal (10 mm) in one twin and measuring at 13 and 14 mm in another. In the days that followed it felt like we saw every specialist and had every test (amniocentesis, MRI, etc.) imaginable. Every genetic counselor and neurosurgeon we saw began our conversation with “Would you consider termination?” I don’t think I’ve ever felt so heartbroken. I am not religious and am pro-choice but I couldn’t fathom losing my girls. At the same time I felt selfish for wanting to have them when the outlook was so terrible and their quality of life might be so poor. Would they be able to talk? Walk? Go to a normal school? Would they be so disabled that they would need special care? If so then what would happen if they outlived my husband and I? I wanted to make the right decision and was beginning to feel the right choice was to terminate when I found this board. It was enough to convince us that we should wait to see how things progressed. The ventriculomegaly turned out to be isolated. At around 30 weeks their numbers went down. Immediately, after their birth they were monitored carefully by the neurologists and we found that the enlargement was probably cause by a hemorrhage but that things were stable. I was relieved but still didn’t know what to expect of the future. Since then they’ve grown up quite a bit! It’s amazing how time flies….. Sitting here now, looking at their sweet faces, I can’t imagine what life would be like if we had followed the doctors’ advice and terminated. They are progressing beautifully with no sign that anything was ever wrong. No one can tell what the future will bring but for the time being we have two completely healthy and normal little girls. I don’t really have advice for anyone else going through this now but I do think that you should take the time to read through the stories here before you make any decisions. I know I learned more from these families then I did from all the experts combined and I really am eternally grateful to them for sharing their journey.

mommy23soon - 2 days ago.
I said I would check in after the birth of my twins to update everyone. Unfortunately my update is a story no mother ever wants to tell – but it is our story. My pregnancy was one of multiple ups and downs. We conceived with IVF and were delighted to discover our second and third children were going to be twins. At 6 weeks I had some terrible pain and was concerned something might be wrong and after an evening in emergency, it turned out I just had some ovarian cysts that ruptured (left over from the IVF treatment). At 15 weeks I had some bleeding and was terrified I was losing one or both of our twins. But again after a night in emergency it was determined that everything was fine and it was a fluke incident. Everything was going well, until our 27th week OB appointment when we were told twin B had enlarged ventricles and we were sent to a specialist. Again, I was in a panic that I would lose one of my babies or that something would be very seriously wrong with twin B – that is when I found this forum. Between 27 weeks and 32 weeks we were monitored by the specialists, the vent measurements decreased every week and at 32 weeks they actually measured less than 10mm. We were released to our regular OB and were told that we would only need a follow up ultrasound after birth just to check the vent measurements again. We were thrilled that everything was ok and we felt like we could finally sit back and just wait for our babies to come. On January 12th our two precious boys were born at 35 weeks via emergency c-section. Twin A, Julian (always referred to as the normal twin) was born flat line and revived after birth. Twin B, Jean-Luc (twin with isolated and mildly enlarged vents) was born healthy, breathing on his own and had no complications. I had had a catastrophic placental abruption and Julian had lost over 50% of his blood by the time he was born. After a 37 hour fight, my dear Julian died in my arms due to extensive organ damage done to his poor little body as a result of the placental abruption. Jean-Luc had a short stay in the NICU, due to being premature, but has been growing and thriving remarkably well since birth. He is very alert, eating well and his growth and head circumference are right where they should be. We have yet to have the follow up ultrasound, but plan on having it done before the 6 month mark just to be sure. I felt it was important for me to share our story, because when we were given the diagnosis of ventriculomegaly – at first we thought it was the worst thing that could have happened to us. But as we researched it and read other people’s stories, we decided that our diagnosis of enlarged vents was not as bad as we had originally thought it might be and we would be able to deal with it not matter what the outcome. And after the loss of our twin Julian – the original ventriculomegaly diagnosis we were given for Jean-Luc seems trivial. It does not matter to us, even if Jean-Luc does end up having some issues associated with ventriculomegaly – he is our son and we love him no matter what. We are also just so grateful to have him with us; he is so perfect in every way. I will hopefully post again after our follow up ultrasound and wish everyone on the forum well.

samanthajane107 - 3 days ago.
Thanks Timm for your reassurance and great to hear your little one doing well. Katie, it seems to me that after all this it is natural to continue to worry even after baby is born but try to take some comfort from fact doctors are happy with your son's progress. Hill, really sorry to hear your news, I think the constant scans and diagnosis with no definate idea of the future is terribly hard to deal with. We also have been going through this since 20 week scan & we see consultant again on Friday when will be 28 weeks & I know flowing the MRI we had on Monday he will offer us a termination & even though I know we won't do that whilst ever there is a chance our baby will have a good life it is still very upsetting to just hear it suggested & for someone to give us the possibility that things won't be so great for our baby whom we already love dearly and who I can feel wriggling around very much alive & living! I try to carry on positively buying things for the baby & decorating the nursery & try to forget about all this but it's very hard when you are constantly being sent to the hospital for scans & discussions. I often think I would have been far better off never knowing any of this! Thoughts are with you & hoping for the best for your baby.

katieandiggy@tiscali.co.uk - 3 days ago.
Hill- please click on the name Turtlemom on this board it will take you to her blog. I'm sure you will get great comfort from what you read.

carriebaby888 - 3 days ago.
My cousin started a facebook page for parents of babies with shunts, for support...but her son also has hydrocephalus...the link is https://www.facebook.com/groups/294566913924047/ I'm sure they have some info if you want to talk to anyone there

hill - 3 days ago.
Im new on here so not sure exactly what im doing. I am 24 weeks pregnant and was told at 20 weeks during an ultrasound that our little girl has Hydrocephalus. I have also had an MRI which confirmed the ultrasound. They said if it keeps getting worse her outcome will not be very good. I had another ultrasound last week and the fluid is still getting worse. We are not giving up on her and I pray every day for a miracle. The Doctor`s have me so stressed and scared for her. I was just looking for mom`s that are, or have gone through this and would like to share how they are dealing with the info.

katieandiggy@tiscali.co.uk - 4 days ago.
Well the news for me isn't great, the ventricle size enlarged it's now 17mm at 7 weeks old. My consultant says it's ok and that the ventricle will enlarge with the size of the brain growing. I didn't think this was the case, although I have read somewhere that they do grow the most between 2 and 6 weeks of age. He said the baby looks great he is doing all he should be, smiling, moving etc his head has stayed on the same curve and he wants to see us in 4 months!! I really want a second opinion as I don't think the ventricle should grow like that.

timmpierce@gmail.com - 4 days ago.
Samantha, our son was also diagnosed with Heterotopia and we too were really worried about all the shivering, jerking and generally 'seizure-like' movements coming from the womb. Our son is now 15 days old and has so far shown no sign of suffering from seizures. He is however extremely active kicking, stretching, waving his arms about etc. so I think that was what my girlfriend was feeling during the pregnancy. So it's natural to be concerned, but what you're feeling is quite likely to be totally normal.

samanthajane107 - 4 days ago.
Hi Guys, We had our 2nd MRI today and now seems far more certain that baby has unilateral closed lip schizenchephaly and Heteretopia which are causing the enlarged ventricle. Vent was just over 12mm today but they didn't seem too concerned with this now as it's the underlying condition we need to concern ourselves with. Does anyone have any experience of this? I know seizures and hemiparisis are likely outcomes for us. Amy73 - odd you should say about feeling unusal movements, I am 27 weeks and started to feel some jerky movements sometimes which to me have fwlt like may not be normal and knowing about possible future seizures had both me and my husband wondering if this was early seizures but being my first baby i have nothing to compare with so could just be normal!

amy73 - 4 days ago.
Katie, hope you get the answers you need today - all thinking of you. It has made me very reflective this weekend after reading your post. The thing that gets to me about this condition is that the worry never goes away. One minute it's possible to feel really positive about things and the next totally worried about everything. I've been really worrying this last week - well deep down ever since I've been able to feel strong enough movement - but more so this last week, because I've convinced myself that the baby's movements aren't normal - sometimes they do, but often they feel very repetitive jerking like movements, which I don't remember with my last two. This may be normal but because of the vent thing its made me convince myself otherwise. Has or did anyone else experience more unusual movements within the last trimester?

two-on-board - 5 days ago.
You can see the CC on ultrasound once babies are born x

kjh6b@hscmail.mcc.virginia.edu - 6 days ago.
To all interested in cord blood banking - Cord Blood Registry (CBR) has a 'Designated Treatment Program'. Those with a prenatal diagnosis that meet their requirements and are approved by CBR pay only $150 total for the collection and storage of both cord blood and tissue for 5 years. The blood and tissue is available to your baby for treatment of any condition related to their prenatal diagnosis within these 5 years. If needed for treatment of another condition - or for another child before the 5 years is up you can pay the normal fees and have the blood released to you. Same goes for the end of the 5 year period. I just received a call today that I was approved with a diagnosis of mild fetal ventriculomegaly. Just so you know I did have outside factors. I broke my wrist at 22 weeks bad enough to require surgery which may or may not have contributed to my sons ventriculomegaly. I don't know if this contributed to my approval with CBR or not. But if you are interested in cord blood banking I would encourage you to contact CBR and ask about the program. I didn't think we would be approved, but as the CBR rep told me - it's worth a try. He was right! For those of you outside of the US I know they do offer international banking - don't know how this affects the designated treatment program if at all. Here is the link for more info from CBR... http://www.cordblood.com/infokit/referral.asp?contactid=1-5TVBD1 amy73 - I'm pretty sure your baby had vents the same size as mine? 11.9mm - although my sons is unilateral. When we went for the fetal MRI the neurologist told me at this point there was no reason to change our birth plan, to expect a c-section, or to expect the baby needing any type of extra care at birth (beyond the ultrasound at 4 weeks and monitoring of head size and developmental milestones). I would still check with your doc on your birth plan - just wanted to let you know what I was told since we have pretty similar measurements. katie - I'm so sorry to hear you're going thru so much worry with your little one right now. Please keep us updated on his status. :(

turtlemom - 6 days ago.
And, I'm not sure if they can see the CC by US. I would want a MRI to see all the structures in the brain it I were you. Our last CT was $8000 US before the insurance discount. It was very in depth but even a CT was expensive. I can't remember how much the MRI was. It's crazy how much this stuff costs.

turtlemom - 6 days ago.
An MRI wouldn't show seizure activity, just the EEG. Honestly, if it was a seizure, it was probably febrile (associated with fever) and may not show up on the EEG. Unless it is easy to get the EEG, you nay want to just wait and see if you notice any other unusual behavior. You tube has a lot of videos of different types of seizures. I really hope you are not walking this path.

katieandiggy@tiscali.co.uk - 6 days ago.
Thanks Turtlemom I will mention this to my consultant on Monday. I have a lost of questions to ask. He has still not even suggested an MRI. I thought that would have been an automatic thing. While I was at the hospital I asked about my consultant and apparently he has a clinic in London and is a very experienced doctor so I guess I should trust his judgement. I know MRI is obviously the creme da la creme of imaging but would major abnormalities of the brain show up on a level2 ultrasound? He did the scan for a good 45 minutes-1 hour through the fontanelle and said the brain looked normal, I mean can he see the corpus collosum and things like that on an ultrasound?

turtlemom - 6 days ago.
Katie, I'm not sure how easy it is to get an EEG in the UK. Even here it may take weeks depending on your doctor. There is a type of seizure disorder associated with fevers. The bad news is I'm not sure if this one would come up on an EEG if your baby isn't actively having one at the time. There is another type (absence seizures) where they just stare off. This type of seizure does have a specific brain pattern that does (should) show on an EEG even if the patient actively seizing at the time. Hopefully this was an isolated incident.

amy73 - 6 days ago.
Kjh, that sounds great news! At least the head being bigger in size means that nothing is getting squished inside and anyway, if the head circumference is large then surely a vent measuring 11mm is nothing! Both my two previous children were big, my daughter was 9lb 10oz so who knows what size this one is going to be? YIKES! We have our next scan a week next Friday when I'll be 32 weeks, so will be interesting to see how large he has got by then. I'm hoping that the vent thing wont effect me having a water birth. It's what I had with my last two and wouldn't want to do it any other way. Does anyone know whether it would effect the type of birth we have?

katieandiggy@tiscali.co.uk - 6 days ago.
Hi everyone I'm looking for some more advice. I've had a hellish 24 hours. Basically I woke up at 4 am on Friday morning, the baby was in bed with me, he felt a little warm to touch so I got him up and gave him a bottle and some calpol (Tylenol) he went back to sleep ok. When I woke up around 7 am he was uncovered I noticed he looked pale especially his hands. I had a doctors appointment anyway as he had some exczma so I had the doctor look him over, his temp was 37 which is normal for him, his ears, throat and chest were clear. We went home and he had his bottle and slept for a bit. He woke up a bit later and I noticed he was groaning a lot like he was in pain. He had another 6 oz of milk. As the day went on I noticed he was sleeping more and more he became quite lethargic, he was groaning quite a lot even in his sleep. He passed some wind but continued to groan now and then. By 4pm I was worried about him ad he had slept most of the day, and when he did wake up his face was all screwed up like he was in pain and he groaned. We went to a and e (Er) and they hooked him up to a heart rate machine, his head rate was perfect as was his oxygen saturation, he was very sleepy and when he did wake he was very distant, he continued to feed well though. No vomiting or dioreah. We were referred to a pedi doctor due to his vent as the a and e doctor did not want to take any chances. He was examined again, I think the pedi was more conceded about an infection I.e meningitis. He ordered bloods to be done which I can tell you woke him up from his sleep like you wouldn't believe! The pedi also really squished his tummy and he let out a fair amount of wind. He was no longer groaning at this point but still very sleepy. He had another 6oz bottle at 10pm. All the bloods came back completely normal, all of his observations, temp, heart rate, respirations were all completely stable. The pedi felt the fontanelle and it was completely soft and he said he had no worries about the head as he would have expected vomiting and a raised fontanelle if there was any increased pressure. (we are due for an US on Monday anyway) We were told we could stay in for observation if we wished but the sister advised us to go as the ward was full of Coughs colds flu etc and she said he would end up catching something. So we were discharged. Fast forward 12 hours after a settled night with 1 feeding, he is awake and alert, still feeding fine. I feel today he is not making very much eye contact with me, he does appear to be looking around the room but just won't focus on me very much, normally when he has his bottle he always stares at me but today he's looking in my direction but don't seem to be focussing on me. Sorry for the long long post, basically my concern is that he may have had some kind of seizure?? And the sleepiness was the aftermath of it. I did not notice him behaving strange at all, no twitches or stiffness but I am not looking at him 24 hours per day so could he have had one and I not noticed? Would he have still woke up to feed? Would his vitals all be stable? Could him not focusing on me be related to yesterday? He has been awake for a couple of hours now he's making noise, kicking his legs, moving arms all ok. I hope somebody with experience of seizures can let me know if anything sounds familiar.

LDMusgrave - 7 days ago.
kjh, that must mean there's lots and lots of flourishing, beautiful brain tissue in that big noggin with such tiny ventricles.

kjh6b@hscmail.mcc.virginia.edu - 7 days ago.
Hoping for positive results for you on Monday Katie! amy73 - My sons vent measurements did NOT increase. In fact the measurement even went down a little from 11.9mm to 11mm. I know this could just be human error as far as where they're clicking on the screen, but it sure was WONDERFUL to hear that number. His head size is now 5 weeks ahead, but they're still saying they don't think it is at all related to his enlarged vent. They think he's just a big baby (he's 5lbs 13ozs already at 33 weeks - they said I'm looking at another 9 pounder) with a larger than average head size due to genetics. He was 2 weeks ahead at 29 weeks - 3 weeks ahead at 30 weeks - and now 5 weeks ahead at 33 weeks. Kind of worried that it's enlarging that quickly, but then again not too awful much because both of my girls were big babies with big ol' nuggets. :)

amy73 - 7 days ago.
Hope all goes well with ultrasound on Monday Katie - things sounding very positive so far! I was also wondering Kjh how things went with you on your last ultrasound? Hoping all is well.

katieandiggy@tiscali.co.uk - 8 days ago.
My son is now 7 weeks ok'd, wow time flys! He is doing great, he's just started smiling and cooing, it's so sweet. He is going to the hospital on Monday for his head ultrasound, I'm really nervous, dreading it. Just hope at worst the vent hasn't increased. I will update on Monday. Blessings to you all.

turtlemom - 10 days ago.
What a wonderful story, Mommy2e! Thank you so much for coming back to update!! Many continued blessings to you and your boy!

Mommy2E - 11 days ago.
LDMusgrave, it boggles me too which is why I am so glad I found this site...the support and reassurance here from moms and dads who have been there, are truly inspirational.