My third baby (up to week 21 of pregnancy) was diagnosed with fetal ventriculomegaly at my 20 week scan. This condition means a dilated fluid-filled ventricle has been noticed, in this case measuring 10.3mm. Outcomes are meant to be usually good - in most cases the baby is born normal and healthy, but its still a concern and needs follow up scans to check that the fluid space doesn't continue to dilate. Wondering if anyone else had experienced this?
I know you are going to be worried now for the whole rest of your pregnancy, My DS Jett is now 14 months, at our 20 week scan we went in and saw everything and toward the end they told us dont worry all is pretty good, This was my 3rd baby too and had just come to expect a totally worry free pregnancy and healthy baby was naturally going to be the outcome? sound familiar? It was all pretty standard until after a lesiurely lunch with DH we went back over to get the beautiful 3D prints of our DS we had rang family and friends to tell them it was a boy and all was great!!!!
So at the ultrasound place they took us to a room and told us that our DS had fluid on the brain and not to worry but our OBGYN who was at the private hospital accross the road was waiting to see us...worry and panic set in and I cried and cried, we were taken straight in at our OBGYN (no waiting like usual staring at the anne geddes babies on the wall) He did say not to worry, at this point all I could think about was SWELLING and BRAIN not good.
He made appointments at Mater Fetal Medicine, we had more scans to go.....
Well long long long troublesome story short, after many expensive visits to the hospital for scans to tell us our DS left Ventricle was out by 2 sometimes 3 mm we were told at 21 weeks "termination is on the cards here, let us know what you want to do" another cold room and only DH and me, well we had bonded with our DS already and it was not on the cards for us. They told us that we could keep coming in for scans at the cost of $220 each or just wait it out.
We did what was probably the scariest thing of all was to wait it out, They told us about possible shunt operations at birth and the outcomes were good, we were told our DS could have cerebal palsy or hydrocephyl or any of those outcomes etc etc etc... You get the idea.
Well after DH and I had a heart to heart, every fortnight the scans were really too much for me to bare and we decided to go it blind and try to enjoy the rest of the pregnancy, (I didnt really, most stressful 17 weeks of my life) My OBGYN also advised a caesar was best to stop any stress on DS during the birth as I had had one long long birth and a quick one also. So prepping for the c/s was pretty fun LOL.
two weeks before DS birth we went in for a meeting with staff and our OBGYN for possible outcomes etc... If DS had fluid it would be detected ASAP and off to the major hospital he goes if all looks well he would stay with me at our private hospital.
Roll on March 23 (two weeks after DD 7 birthday) we went in and after a traumatic caesar (me- anesthetic troubles) DS was born....
9 ON ALL APGHARS, ALERT AND SCREAMING-A LITTLE BREATHING DIFFICULTY -CAESAR EARLY BIRTHS USUALLY ARE.
14 months on the most healthy smart baby boy that walked the earth. (yep-we are bias)
My advise to you is dont worry all will be fine, if you need to talk to me contact me and I will tell you anything else you need to hear.
Oh and FWIW so glad we didnt terminate, our life would be empty without him in it!!!
Today he spend a good portion of the day carting around his toy dog saying "dog" and pointing to it!!!!
Lindie
Last edited by lindie; May 19th, 2007 at 09:46 PM.
: adding more
Hey there,
I know exactly what you are going through!!!
At my 20 week scan, bub's was diagnosed with a mild form, but we were never told of the size. I absolutely FREAKED out! I had no idea what this meant.
After a day or 2 of freaking, my doc told us that it was only on the high end of normal, and that bubs would only require a scan within his first few weeks of life.
At my 28weeks appointment at the hospital with my midwives and docs, the obs overlooking my 'case' organised for me to head to Melbourne for a Tertiary scan... they wanted to get a better look at it.
We went to Melbourne on Monday just gone, and my beautiful little boy is perfect!!!
They looked at his verntricle, his fingers and his face. He has no signs of downs, which rarely can accompany this.. but only in very bad cases.
He's a perfect little boy!! yay!
We spoke with a peadiatrician from royal childrens, as well as the obs who did the scan, and they were both very confident that everything is well within the normal range.
They ahve organised with my Hospital, to have bubs head scanned within his first week, just to be on the safe side... but they really don't think there will be any issues. What a releif!!
I am not sure if you found out the gender of your bubs, but I know that this is more common in one moreso than the other.
I also know that had bubs ventricle still been on the large side at birth, they would have put a shunt in his brain. No MAssively huge deal.
I remember Alan telling me a while ago, that this is diagnosed in approx 5% of pregnancies, and that in 90%+ cases, it generally fixes itself.
If you need any more info or just need someone to talk to... please feel free to talk to me. I think my MSN addy is in my profile.
Good luck with the rest of your pregnancy! I'm sure you will have a great outcome as I have
hugs
Nicky
By the way, termination was never discussed with me at all! Being my forst pregnancy, I think my docs may have been trying to shelter me.
Last edited by ~*Niadalla*~; May 19th, 2007 at 09:58 PM.
Thank you SO much girls for your fantastic reassuring responses. I can't thank you enough.
I can relate to those feelings of dread etc you describe when first told of this diagnosis. Just as I had been thinking how very lucky I am to have a cruisy pregnancy, my 20 week scan suddenly flags concern; I am called back in for another scan two days later which resulted in lots of tears and then given an immediate appointment with my ob. I felt quite horrified when termination was discussed. The days since then have felt like a blur.
I love my ob and she is very clear and attentive and wonderful, but unfortunately I am a natural worrier (luckily hubby is always calm, reassuring and rarely freaks out at anything).
Hubby and I were offered amnio and MRI scans; apparently the amnio is only really for consideration if you choose to consider termination, and that there are only a couple of weeks left to organise a termination before ethics committee approval would be required. Anyway, hubby and I are resolute and of the same thinking (thankfully!) that termination is not going to be considered as an option. As mentioned, we too have bonded with this little person who is making her presence known with lots of kicks, and is measuring completely normal in every other way apart from the ventriculomegaly. My 4yo and 2yo are getting concerned and of course they too have bonded in anticipation with their new baby sister.
One thing that absolutely scares me is the looming chance (albeit a small chance) that should things get worse re the ventriculomegaly, I could be admitted as a high risk patient in one of the big hospitals where they would do various invasive procedures to assist the baby before birth and then after birth the shunts etc.
Statistically it seems there is a 93% chance of a great outcome (33% chance the dilated fluid patch would shrink and 60% chance it would stabilise), while there is a 7% chance of a poor outcome. So we are really just hoping for the best! Unfortunately this has cast a dark shadow over my previously enjoyable pregnancy though.
How great to hear your positive stories and great outcomes. Thanks again.
PS - I'm wondering also if recent advances in the accuracy of ultrasound technology have made them pick-up subtly elevated measures which result in the diagnosis of ventriculomegaly? Imagine in the days when the measure wasn't even noticed and we didn't have to go through all these worries?
No medical technology has always been pretty good in the last 25 years when it comes to ultrasound and brain MRI, its not really a new thing, But its hospital policy and OBGYN ultrasound policy to inform the patients now of this abnormality (or such)
When it comes to Ventriculomegally and shunting, It is only when the ventricles swell agressively and I am talking double the size that shunting is discussed as an option, rarely do they now shunt babies BUT it is still an option, Not too sure if you watched saving babies on channel nine I think recently they shunted a premmie twin where they just made a direct line to her Tummy to release the fluid.
All of these problems will come out after birth, My only advice in medical technology is that we were unaware that forceps (rather large salad tong like objects used to pull a baby from the mother) is also used routinely in caesars also, when babies are well engaged, breach etc... so In my case I saved absolutely nothing by having a caesarean at all, so dont be talked into that one by your OB either!!!! LOL
If you are going private just let the midwives know in your booking appointment that you have had a diagnosis of ventriculomegally. It will just make it a little better for them RE: monitoring etc...
I am aware the the PP in this thread also has had a diagnosis but I really like you wanted to hear from mothers who had had there baby already....which probably would have made my last trimester so much easier to handle...
That said I am 24 weeks pregnant with no 4 and I know that my DH and myself didnt really feel FANTASTICALLY CONFIDENT about the pregnancy till our 18 week ultrasound and being private we made them check and recheck and remeasure all of our DD ventricles, heart values etc... Before we were settled this time, It really does change your outlook on pregnancy I will second that!!!!
All the best Berry
Let me know how your getting on!!!
Im easy to find in the Belly buddies september threads!!!
I'm going better after the initial shock and I feel so lucky to have heard from you and a couple of others who have been there - I can now actually discuss things optimistically without shedding tears.
I think I read on the internet or something that after the ventriculomegaly is detected at the 20 week scan, that the next ultrasound in a couple of weeks time will pretty much be decisive in letting you know if you can anticipate a good outcome. So in that case it should be ok to just have the next scan and then no more scans and hope for the best from then.... What are your thoughts on that? I was in shock a bit at my ob appointment so probably didn't take every detail in, but I did ask that if the next scan shows the fluid measurement to be stable or not any worse, then what next. She said that then its back to square one - not sure if she meant that every two weeks you have to wonder and hope it won't suddenly get worse.... Anyway, I'm just hoping I don't have to have loads of scans from now on.
I'm happy to go with c-section as my second born arrived by emergency c-section and I have too much anxiety about attempting VBAC.
I am going private, and didn't think of letting the hospital know re this diagnosis but that's a good idea. The ob reminded me that at least with my c-section booked the baby will automatically have a paed available to check her...
I'm glad all your checks have been good for your present pregnancy, that is great - you deserve a less stressful one this time round!
Hi berry,
Glad to hear you are feeling better.
The best bit of advice I received after gettinng this dianosis... DONT GOOGLE!!!!
I know bhow temtpting it is.. I wanted to be prepared for the worst, but in the end, talking to people who had actually gone through the same thing I was, was much better!!
Had another scan today... Still all clear!! I am only having scans now as they want to monitor the growth of bubs, every 2 weeks, also due to my BMI and complete confusion of due date.... lol
I wasn't originally having anymore scans after 22w, but when they suggested them, I went along with it... nothing like seeing bubs heaps!!
I guess it can't be so bad having frequent scans then as a lot of people seem to have them for various reasons; and you're right, getting all those extra peaks at the baby would be good too
Re the GOOGLE thing - I knew before I looked up ***ventriculomegaly*** that it would just scare me, but just couldn't help it! Some of the info was reassuring though and reiterated what the ob had told me....
I also did a google on prem babies after my second born arrived at 27 weeks and there was so much scary info to worry you, but she is now over 2 years old and has no developmental or medical problems at all!
Just wanted to update and give my GREAT NEWS re the follow up scan today; the cerebral fluid measure now falls within normal range! Yay! So no more tests or anything until another scan at around 34 weeks. Such a relief. Thanks girls for your fabulous reassurance re this it helped me through the dreaded two week wait.....
Am so happy for you!!!!!
It's such a releif to hear that things have taken a turn for the better!!!
only 119 days to go now!!!! At least you don't have to stress out as much!
I havent even worried about it at all since my scan in melb all those weeks ago.
How exciting!! We should have our gorgeous little babies in our arms very soon!!!
Hey you're lucky to only have 4 weeks to go!! I am just about up to week 25, and baby is planned to be born by c-section in 13 weeks time!!
I'm not worrying at all about the ventricle measure which came up at the 20 week scan; the ob just said it will be mentioned in my history and she will tell the paed who checks my baby after delivery. But all is assumed to be fine now. Phew...
Now my next hurdle is to not have a prem baby as I did with my second-born who surprised us at 27 weeks...... But there's no signs of that happening, so now my biggest dilemna is what to call this new baby girl! At the moment I like Sarah or Sara.
Good luck with your scan tomorrow, it will be exciting to have a sneak preview of bubby!
Fetal ventriculomegaly
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re the follow up scan today; the cerebral fluid measure now falls within normal range! Yay! So no more tests or anything until another scan at around 34 weeks. Such a relief. Thanks girls for your fabulous reassurance re this it helped me through the dreaded two week wait.....
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