Borderline bilateral ventriculomegaly at 22w - support thread!

[Tulip]

Yes sometimes with bm certain parts of the brain such as the septum pellucidem and the corpus callosum don't develop, but I couldn't really get any answers as to what part they play in the brain and what their absence means in the real world.

An early delivery will mean they are able to treat the excess fluid, and a c/s will be much less stressful for her little head. You must be so scared, and after such a rough ttc journey too I will hold you and your little girl in my heart while you await the results and her safe arrival xz

 

[Angelinheaven]

Can someone please help me understand this report? I am so anxious and feel nervous. I need someone to talk to me. Please help me. I know that some ladies have been through this and can give me some support.


MRI Foetus

The patient is 29 weeks gestation at the time of scanning. The foetus was very active and we did not obtain ideal sequences however there is evidence of significant hydrocephalous with marked dilatation of both lateral ventricles.
The third ventricle is not prominent. The fourth ventricle and posterior fossa and cranio-cervical junction all appear normal. Atrial diameter was 23.8mms Although I cannot definitively identify the corpus callosum the morphology of the ventricles is not suggestive of callosal agenesis. There does seem to be a septum pellucidum visible anteriorly but I cannot definitively identify it more dorsally. No evidence of any mass lesion.
The brain appears immature for 29 weeks with a sulcation pattern more compatible with approximately 26-27 weeks gestation. No definite cortical abnormality although assessment was limited by the degree of foetal movement. Overall there is evidence of significant lateral ventricular dilatation. Although the third ventricle is not obviously dilated an aqueduct stenosis remains a possibility. There sulcation pattern appears immature.

 

[Angelinheaven]

please help - which is the best hospital in London for foetuses diagnosed with ventriculomegaly or hydrocephalus please? i am realllly lost!!!

 

[Tulip]

We would have been referred to Prof Kypros Nikolaides at King's - he's really famous and seems to be the expert in foetal care xx

 

[Angelinheaven]

Thanks Tulip. i have heard about him. I wish i could make an appointment with him very soon. Right now i am blind. MRI didnt give much info more than we knew. i'd have to wait another month to see if the fluid increases or not and if so, if it affects the brain. i have been reading through internet that children with hydrocephalus or ventriculomegaly can suffer a lot and cannot live a normal life. does this mean that i have to stop working ? one of the things that is worrying me is that i would not have enough money to help this child live a normal life. its so frustrating and got me really depressed. i wish i never lived

 

[Tulip]

You don't know how much it will affect her. She may have very mild learning difficulties. If she does have a disability then there ARE childminders and nannies and nurseries that can care for an extra needs child. The government would provide financial support to help in looking after her, having a sick child doesn't necessarily mean the end of everything you know.

I once read an interesting analogy about raising a child with a disability:
www.our-kids.org/Archives/Holland.html I appreciate you must be so lost now. I wonder if talking to the parents on bnb Special Needs forum would help?

 

[Tulip]

Tegans Mama and Emmea12uk both have children with Hydrocephalus alongside Spina Bifida - I'm sure if you message them they would talk you through how the Hydro is treated.

 

[Angelinheaven]

thank you for the reply. i dont live in UK so i have to come from another place. I have been to London hospital for MRI and amnio. amnio result not out yet. baby was moving a lot so the MRI pictures were not that clear. i am so disappointed from this fact as they should have taken more photos when the baby was in a good position. does it necessarily mean that my child will have a disability? or there is hope that all will be ok with her? sorry for all these questions but i feel safer talking with mummies like you

 

[sarahhut]

Hi all I want some advice if anyone can help me, I lost my little boy at 23 weeks + 4 days 2012 I didn know I was pregnant, when I went for my 1st scan they seen his head was flapping due to severe ventriculomegaly, I have a very healthy 4 year old girl, I'm currently expecting again babys due next may, but I'm very scared its going to happen again, I have been for my 12 week scan baby looks normal and there was no flapping of babys head, then I read it only happens in the 2nd trimester could someone please be able to tell me if its likey to happen again as I'm really scared and worried about this pregnancy, I want baby to just be healthy thanks x

 

[Angelinheaven]

PLEASE PRAY FOR A MIRACLE TO ALL THOSE MOTHERS AND MOTHERS TO BE WHOSE BABIES ARE ILL. Miracles do happen! I absolutely feel terrible and somtimes i just want to sleep for ever. PLEASE GOD HELP US MOTHERS and GIVE US HEALTHY BABIES.

 

[DALILA36]

Hello ladies, I am all new here and found a thread regarding this topic but upon registering I lost it and cant find it

Well, yesterday I had my 20 week anatomy scan, the MD came in to tell me the baby looks great and everything looks normal except a ventricle in the brain which appeared to be measuring at 9.5mm. He went on to explain that the nromal ranges are between 5mm and 10mm but becasue of the position of the baby (he was upside down) he could not clearly determine, he spent an additional 20 minutes scanning the brain and trying to get measurements and trying to determine the location of the corpus callustrum (?spelling) to accurately measure it...the doc then told me and my partner that we would need to return in 2 weeks to repeat the scan in hopes that he would get a better image next time around and get an adequate measurement. He went on to tell us that even though it is in the higher range of normal that it is still normal and we should not worry about anything becasue the important thing is the baby looks great!

So naturally, I worried and am still worrying. By the way, I am having a boy, my 3rd child with my first tow being girls. I read on a thread here that larger sized ventricles are common in boys yet I cant find that same information on the web....go figure...

Ladies, how many of you experienced this same ordeal with postive results in the end???? I would appreciate any advice

 

[Tulip]

Hi Dalila, several people on this thread have had a similar story to you,with normal outcomes. My little boy was measured with an 10.1mm vent but it was within normal range a week later. He has just turned two, is very advanced, speaks in sentences and yesterday managed to load an episode of postman pat on the sky+ box and play it

I know it's scary when docs want to do further investigations but rest assured your son is measuring normal now, he's just being cautious. FX that your return scan can set your mind at ease

 

[DALILA36]

Hi Tulip and thank you for your reassurance. I am.sure you are right and i am just worrying for nothing.

So good to hear your little man is doing great, sounds like a genius!!!! I dont even know how to upload games or movies on my laptop
I will post back after the 17th and update you on my outcome.

Happy day

 

[bluedevil.zg]

Hello ladies, and 1st of all thank you so much for all the experience you're sharing.

I am an expecting dad, wife is 29w0 today. Yesterday we went to ultrasound checkup and everything is OK except for the ventricules, which are 10.4mm. The doctor said that we shouldn't worry, that another doctor probably wouldn't even say anything about that, that everything else is good, but my wife is in panic. She is always too scared of everything, IMO, but now as she's pregnant she's really out of herself.
I did a ton of reading, research, and whatever I say can't calm her. I am a bit afraid too, I must admit, but I don't wanna show it to her, I just try to calm her down.

So, the doc checked thoroughly the head, bladder (filled with urine, so kidneys are working well he said), heart, umbilical cord, amniofluid, placenta, baby's tummy, weight, leg size, etc - all is perfect. Head is a few days smaller and legs are a few days larger than "by the book", which is also OK. We did screening in 1st trimester for trisomies, and all returned good, no amnio reccomended... Baby moves a lot, she was (it's a girl) moving also when the doctor was passing over her head with that ultrasound sonde, and she kicks and moves throughout the day a lot. So, basically, everything seems perfect, except for this 10.4 of V, and we are very worried for that. At 21w doc checked V's and they were 7mm, meaning they've grown - is that normal growth, to be expected as the whole baby grows? Back then, I presume, 7mm was normal and OK, and now it's 10.4

I'm trying to stay calm, but I find it very hard to do. And seeing my wife eating herself out and worrying sick because of that makes me wanna cry. I know I mustn't do that, I must keep telling her that it's nothing, that this one measure "at borderline" as the only factor means nothing (as the doctor said), but inside I really am worried.

What should we do? Next appointment is in 3 weeks, but I'm afraid she'll go completely insane in 3 weeks. Should we go to a private clinic? Ask for a second opinion? But then - why? It's really just this one measurement, and it's not "bad" or "mild" but "borderline".

I've read about two researches, done in 2005 in Italy and in 2007 in USA, and both doctors & their teams reccomended that this "borderline" be moved to 12mm instead of 10mm, because more than 97,5% of cases where V was between 10 and 12 and no other anomalies were found on the baby ended up perfectly well and without any problems for the baby (measured at 2 years of age). And it makes sense, and it concurs with all the data I've gathered in this thread here.

Still, I'm not at rest, and I'm not sure if I'll be able to keep my wife "in dark" about that for the next 3 weeks. Because if she even remotely smells that I too might have worries, that's it, she'll have to be sedated or something - it's just the way she is.

 

[janey1975]

I soo sympathise with you and particularly your lovely wife. In fact, I think me and your wife are extremely similar indeed. I worry so much. When we were told the measurement was 10mm at my 20 weeks scan I was extremely worried and even though when we were referred the same day to Kings in London and they only got 8.9mm as their largest measurement I was still in a panic. Like your wife, I was beside myself and I could not wait the 8 weeks until the next scan.

So, we decided to pay to go private and visited the Fetal Medicine Centre in Harley Street, London. We went on a Wednesday when the absolutely amazing Professor Kypros Nicolaides was available to offer his expertise. The lady that scanned us was great and the level of detail available on that machine was fantastic. Then when the Professor came in and looked over the measurement he was so very reassuring. When the leading expert in fetal medicine tells you not to worry then you take his word for it. Seriously, I would have paid thousands of pounds for that reassurance (it only cost about £200 and the best money I have ever spent). It was also lovely to know that any profits that they make goes into fetal research. You may have to wait to see him once you are there (he can get called to emergencies etc) but well worth the wait

I don't know where you are from but if you are able to see him I would recommend it. The website can be found here: https://www.fetalmedicine.com/fmc/. If you are not near London I would consider still getting a scan in a couple of weeks.

I think you have been a wonderful support for your wife. My husband was so calm and positive that it got me through it. I was so nervous when I was being scanned and the panic your wife would have felt I can still remember vividly. She just needs reassurance that all is going to be alright, which is what you are doing.

By the way, our little boy is 17 months old now and he is fantastic. There is nothing wrong with him and my measurements after that first scan went down at 24 wks and 28 wks. We didn't need any more tests later on in the pregnancy or when he was born. All was great and he is learning so well.

I am sure all will be well with your little girl. Like you say, it is only just over the 'normal' range and I think from my research that the normal range should be moved to around 11mm. I really think it makes people panic unnecessarily.

Best of luck and do let us know how things go.

 

[DALILA36]

I've read about two researches, done in 2005 in Italy and in 2007 in USA, and both doctors & their teams reccomended that this "borderline" be moved to 12mm instead of 10mm, because more than 97,5% of cases where V was between 10 and 12 and no other anomalies were found on the baby ended up perfectly well and without any problems for the baby (measured at 2 years of age). And it makes sense, and it concurs with all the data I've gathered in this thread here.QUOTE]

Hello Bluedevil,

With all my research I still did not come across this interesting study you posted about (above). It sounds to me like this is more common than we all thought. That brings me relief...if it is going to help your wife sane, then get a 2nd opinion but since you mentioned everything else is fine then why not wait for the next scan?
I know, easier said than done as I am also waiting for my 2nd scan on the 17th of this month.

I hope all works out well for you both, which to me sounds like it will

 

[Penny74]

Found out last week we are having a boy and a girl. Very excited. Our girl apparently has venticulomegly. Her measurement Is 10mm which is mild. They could tell us very little as to what this could mean for sure but gave us a long list of maybes. Has anyone else had this? We were offered amnio but very wary of this due to the fact it's twins and do not want to risk losing both. At our last ultra scan there were no other indications of problems that they could see with baby girl. They were not able to get clear pictures of her brain or her heart. She is also 18% smaller than her brother (this was mentioned but didn't seem like a huge conern). Trying to be positive but still scared to death. Has anyone else gone through this while carrying twins? Did you opt for the amnio?

 

[Tulip]

Penny, 10mm is actually the top end of normal. Chances are your little girl is absolutely perfect Twins! What an absolute blessing!

 

[Penny74]

Our ultra sound to hopefully get better pictures and measurements is tomorrow. Trying to stay calm and positive.

 

[Tulip]

FX you get the all clear. I know how scary it is, imagining the worst xx