Unborn baby diagnosed with ventriculomegaly and hypogenesis of the corpus callosum

[asparagusaddict]

Hello,

I wondered if there is anyone currently on here with experience of this condition?

Our baby was diagnosed with ventriculomegaly at the 20 week scan. Subsequent scans have confirmed this (I am now 30 weeks) and we are having regular checks to monitor the size of the ventricles - they don't appear to be getting any bigger and seem to be staying ariound 12mm which I take to be a good thing. A foetal MRI scan also found the corpus callosum has not formed correctly and is very small and thin. Scans haven't found any other anomolies so far though we declined an amnio because of the miscarriage risk so have no idea about anything genetic.

We have another MRI on baby next week to check his brain is folding correctly as at the last scan (24 weeks) it was still smooth.

I've searched and searched the internet to find information but I'm having difficulty making sense of what kind of outcome to expect. Our consultant has said there is no real way of telling but the outcome could range anywhere from asymptomatic to very disabled. I've found a few journal articles relating to these brain anomalies but they aren't much help because a lot of people in the studies seem to opt for termination, something we would never consider.

If there is anyone here who has had experience of this - how was the birth managed? Our consultant says there is no reason why we shouldn't try for a natural birth, but I worry about this causing more damage.

Does anyone have any advice? Also any stories about what outcome they had?

I hope no one minds me posting this on here even though he isn't actually born yet, I wasn't sure where else to ask.

[saintlydamemrsturnip]

Hi asparagus - I know my son has some symptoms similar to those who have agenesis of the corpus callosum although he's never had an mri so no idea whether there are any abnormalities.

I can't really advise you specifically because it looks as if the condition is so varied although I've always found it helpful to remember than no-one has a crystal ball. So if someone gives you a doom laden scenario (and some seem to feel the need for that) it's worth remembering that they don't actually know the future any more than you do.

Do you want genetic testing when the baby is born? If so it might be worth trying to make a referral now whilst everyone is still thinking about you, sometimes everyone can disappear once the baby is born.

[Poshpaws]

DS2 was thought to have had agenesis of the corpus collosum in utero (he had an MRI scan when 7 days old and they told us all was fine)

I had planned to have a homebirth and was worried I might not be able to still have it, but the consultant said it was fine, so I did, and all was fine .

I know there are websites out there that have more info on this condition. Maybe if you google (which I did constantly for the remaining 20 weeks of DS2's pregnancy), you may come across a good site.

[familyoffive]

Hi asparagus,
your situation sound so like mine. Enlarged ventricles were discovered at the 19 week scan and since then we have had 3 more ultrasounds. The measurements have been about 10 on one side and 12 on the other. At our our last ultrasound about 3 weeks ago, the one side had gone down from 10 to 6. back to the normal range. The other side is still 12.
we have a midwife, this is our 3rd pregnancy with her, but are going through a high risk ob as well at the hospital. She has more or less said she can't say what this will mean and that she can't promise he will go to Harvard, but that every kid develops differently. At no time have we heard anything about severely disabled.
We have also seen a pediatrician who will come to the hospital after the birth to do a head ultrasound and unless there seems to be any signs of further genetic testing (as this is a small marker for downs), we won't follow up with the ped until 2 months and just continue with the midwife.
No one has given us any definite answers, but they didn't seem pessimistic either.
We have another ultrasound next week and just hope the numbers are the same or that the other side has gone down.

[familyoffive]

Forgot to add, here is a really good forum on ventriculogemaly if you are would like to talk to parents going through the same thing or hear their experiences.

www.i-am-pregnant.com/encyclopedia/Pregnancy/Ventriculomegaly/

I have found it really nice to have through all of this.

hope it helps.

[kate45]

Not sure if you are still wanting to hear from anyone re outcomes for babies with ventriculomegaly and corpus callosum problems? If so we have a dd who was diagnosed in utero with complete agenesis of the corpus callosum. I was also told that the outcome could be anything from asymptomatic to severe developmental delays, also everything I found on Google was negative, but our consultant at the City Hospital in Notts was really supportive. To cut a long and stressful story short we now have a four year old dd who is to date totally asymptomatic! My heart really goes out to anyone I hear of going through the same as we did, I know too well how scary it can be, but I just wanted to say that we do have a positive story. I asked my consultant about the adviseability of a natural birth and he said acc was not an issue at all, but in the end I had a planned c section as I had had a previous emergency one, am small boned and have big babies! Wishing you all the best for your babys arrival.

[Arabica]

Hi and have a big hug, because if you're feeling like I did when I was pregnant with DD, you need one.

DD is 4 in July and is a happy, healthy little girl with developmental delay--she is probably functioning at around the level of a 2 year-old.

DD was also diagnosed with bilateral ventriculmegaly in utero. I don't remember the measurements, but they were on the large side. We were referred for fetal MRI and had lots and lots of scans, and in the end the corpus callosum was found to be intact. The ventriculomegaly remained and I was warned that her level of developmental delay was completely unpredictable.

Once DD was born, the ventriculomegaly acquired less significance as there was a real live baby to look at rather than an ultrasound picture. It was immediately obvious that she had dysmorphic features so the ventriculomegaly was likely to have been caused by some kind of genetic issue, albeit one which they've failed to isolate as yet--which is extremely common.

DD was a bit floppy and had difficulty feeding, so for the first few weeks we had to stay in hospital being tube fed. It was pretty ghastly, but things got better when we came home (and ripped out her tube!)

She has had lots of help and I could not imagine her any other way now. She's just DD, it doesn't matter that she is far less mature than her peers.

Please feel free to contact me if you'd like someone to talk to. I'm now Chair of my local parent forum and you can get in touch with me via our website

[sleepysox]

My son was diagnosed with agenesis of the Corpus collosum (cc is totally missing) and ventriculomegaly when I was 35 weeks pregnant. His ventricals were 35mm wide. His head was found to be abnormally large (off the scale), so I would not have been able to give birth naturally, so I had a c section.

He's now 7.5 months old and is a gurgly, happy, scrummy baby (but I may be biased slightly!). He has poor muscle tone and is generally floppy and his head is on the 91st centile, while his body is on the 75th. He can support his own head until he gets tired, and in general is behind other babies- for example he has only just learnt to reach for things. But he seems to get there in the end- it just takes longer.

We don't know what the future holds- whether he'll be able to walk etc, but things are so much better than what we were told when I was pg and we are very hopeful.

I was so worried when I was given this diagnosis when I was pg and tried to prepare myself for the worst case scenario, but things are not as bad as I thought they would be.

I found this site useful and am going to their AGM in May.

www.corpal.org.uk/

If you need anyone to chat to, please feel free to email me
sally- hinchliffe at gofast dot co.uk

[ot4kids]

Hi asparagus.

I'm a Paediatric Occupational Therapist so I tend to treat just the kids that do have problems versus the ones that are okay. However, I have treated babies and children with Agenesis of the Corpus Callosum and they have ranged from mild to severe delays. There have been those who were late with all their milestones, those who were clumsy on their feet or weak with their hand deveopment, to kids who struggled to hold up their head and coordinate sucking and swallowing. Since I worked in the States prior, most of these kids received Occupational Therapy, Physical Therapy, and some needed Vision Therapy as well, however, these services were offered through the Early Intervention program from the very beginning. I think that Early Intervention was key for the kids who did have delays as you can work on setting the right foundational movement patterns and provide the extra stimulation needed for them to develop motor skills and learn.

Munira

[Ells93]

HI

[Pritu1089]

in my 26th week now and when I got a anomaly scan done they tld me my baby s said to have the same problem which says bilateral mild lateral ventriculomegaly and my babies Rt lateral ventricular measures 12.9mm and Lt lateral ventricular measures 13mm... Is it a problem... Did your babies Vm size decrease aft a few weeks or increase.. I also wanted to knw how your baby s doing now... My report says everything seem to be normal with nose, kidney, heart etc to be normal except the brain part bilateral ventriculomegaly... Please help me I'm so worried

[Clairebearcat]

Hi asparagus
I know your child will be much older now and hope you don’t mind me asking - but how is your child. I’m 29 weeks pregnant and have just been told the exact same thing
Thanks C

[Clairebearcat]

Hi Pruit
I have just been told pretty much the same thing. I was told at 28 weeks now nearly 30 to go for 2 weekly USS and get another MRI. Can I ask how your baby/toddler is?
Thanks
Claire

[Onceuponatimethen]

Claire I’m really sorry to hear you have this worry. This thread won’t show up in op’s threads so it might be best to pm her and start a new thread.

If you haven’t already spoken to them the charity ARC are great for help in situations like this.

[Clairebearcat]

Aw that’s great. Thanks for that - this is all new to me.
Thanks again claire

[Key19]

Hi Claire, I have messaged you privately if you cannot see this. I'm in the same boat... almost 28 weeks pregnant and have been told my babies ventricles are measuring 10.8mm. Can you tell me your outcome please? I'm waiting to see a specialist. Thank you

[BabyO21]

Hi everyone,

I know this post is from a while ago now, but I just stumbled across it while searching on Google. I had a scan at a private clinic yesterday (I'm 27 weeks) so that my mum and dad could see the baby. Unfortunately this idyllic scenario of them seeing their first grandchild was crushed when the sonographer informed us there was fluid on the baby's brain that concerned them. The notes I received after said bilateral ventriculomegaly. We were not given any measurements of any further information as they said it was not a diagnostic scan. All we were told was, it could be from an infection but you need to speak to the hospital.
I'm awaiting a phone call from the hospital now, but I just can't control the panic I'm experiencing. I honestly feel like my world has fallen apart.
Any advice or positive stories would be so helpful right now!
Thank you ❤️