Baby,  baby growth,  Pregnancy

Ventriculomegaly – our diagnosis and experience

In both of my pregnancies I took that once I had my 20 week anomaly scan and it was ok, that we were plain sailing till birth. However, by chance with Dexter, we had a Pregnancy MRI scan via Sheffield hospital as part of the Meridian trial to study normal & abnormal brain development and whether MRI would be a more diagnostic and preferred scan option to USS. We were part of the control for normal development but it was discovered that Dexter had Ventriculomegaly.

Four days after the scan, I was called out of the blue advising that the images had been reviewed by Professor Griffiths leading the trial, and they had found some abnormal measurements in the babies brain. I was completely shell shocked. They briefly said on the phone it could be from an infection or it could be a chromosome defect that wouldn’t be picked up at 20 week scan or by the usual blood test. Early in our pregnancy we had paid for a harmony DNA blood test as we were a raised risk of Down’s syndrome. This also checked for other DNA related problems but thankfully came back clear for everything. This sent alarm bells ringing as our scan and extra blood test was clear.

An MRI scan of Dexter’s brain in utero
Usually, if Ventriculomegaly is picked up at the 20 week ultrasound then you would be sent for a fetal MRI. We had unknowingly done it all back to front!

Classic ultrasound pregnancy scan
We were scheduled for an emergency ultrasound scan the next morning. The drive to our scan department was where I statrted to panic and I felt sick the whole way. I couldn’t think logically or calmly, I was so worried.

Our consultant was lovely and very sympathetic. He sat us down before the scan and explained what Ventriculomegaly was, the variations of severity, treatment and our options.

There is mild and severe Ventriculomegaly. We were in the mild bracket. Ventriculomegaly is the enlargement of the ventricles in the brain over 10mm. The ventricles are spaces within the brain which are filled with cerebrospinal fluid, and so when this is increased there is a chance of the condition hydrocephalus being a factor, which increased pressure within the skull, leading to a range of problems. Ventriculomegaly can occur with brain damage, loss of brain tissue, maternal infections, chromosome defects but it can also be just one of those things, like being tall! It was a bit baffling to have such a range of outcomes and our consultant didn’t really explore the positive outcomes that much, so I felt very lost.

We were offered regular ultrasounds to monitor the growth of the ventricle size or amniocentesis to check for chromosome issues but this would most likely end the pregnancy due to the risk and size of the baby.

Amniocentesis was not an option for us as we were told it was mild ventriculomegaly. Babies with severe ventriculomegaly usually have a poor outcome, we were told but his still is hard to determine as the scans aren’t 100% accurate when taking measurements. It’s a horrible situtation to be in.

I lay back for the scan, I could barely breathe my heart was racing that fast, as the images neared babys brain I didn’t know whether to get up and run or scream. Thankfully the measurements that were recorded, matched the MRI measurements. This gave a baseline reading for further scans and showed that there wasn’t significant growth in the ventricle size. Dexters head was also measuring normal size so the risk of hydrocephalus was small at this stage. It was at this point that we decided to find out if Dexter was a boy or a girl, we were going to have another surprise but something came over us after all of this stress and we just needed to know. I cried, we were over the moon! (Like with Freddie, I had a feeling he was a boy to begin with!) we were so pleased and it was a very emotional moment.

Dexter had another three follow up ultrasounds whilst I was pregnant, these were limited every time due to his skull hardening and it being increasingly difficult to gain a clear reading. However, the readings that were obtained showed the englarged ventricle size decreasing.

I did start to question whether two routine ultrasound scans during pregnancy are enough, if we hadn’t have had the MRI granted we wouldn’t be faced with this worry, but also we wouldn’t have the chance of this early intervention. There was no anomaly on his 20 week scan and yet there are still problems which can arise after this.

Ventriculomegaly on pregnancy MRI scan

The next big moment would be his head measurement at birth and then his head scan when he was two weeks old. I was expecting him to be born and have problems, but his head measured normal, no hydrocephalus and he was just perfect. The head scan at two weeks old was traumatic, I had to hold his little head still for one, whilst his little soft spot was scanned with the ultrasound probe. It was horrible to see and even worse waiting for the results, which we were told at that point that his right ventricle was only slightly bigger, within normal range. No signs of any issues and Dex is a healthy, happy baby.

Sleeping baby
He will have his last follow up in six weeks and hopefully we can close this chapter in out lives.

Have you experienced ventriculomegaly? Do you think that there should be another routine scan to follow the 12 & 20 week?


  • laurasidestreet

    I’ve never experienced it but it must of been scary and nerve-wracking! My youngest was born with an extra digit on his right hand and an extra digit on his left foot as well as a small hole in his back – none of these came up in any of the scans and when he was born I was told he could have Spina Bifda but luckily he does not but it was really scary! You just never know so when they are healthy you feel so grateful

  • Lubka Henry

    These kind of scans and checks may give information, but also give unnecessary worry. In Bulgaria, where I’m now, the MRI scan is compulsory, though you have to pay yourself. I had a friend not going for hers, because she didn’t want to be given worries. There are so many cases when they just stress out the mum and in the end – everything is just normal and baby is healthy.

  • Dannii

    I’m keeping everything crossed for you. I think there should be another scan, but I know resources are stretched too. We had 6 private scans during my pregnancy too, as I just wanted to know everything was okay.

  • serenityyou

    I have a 3 year old nephew that has a brain tumour. He sometimes has his 4th ventricule collapsed, leaving him with headaches, slurred speech and jelly legs. The doctors treating him do believe that he was born with the tumour, but it never showed up on his 20 week scan. But if he had a further scan later on in the pregnancy it might have been picked up. We didn’t find out he had a brain tumour until just a few weeks after his second birthday

  • Louise

    Hi I hope the next visit is a positive one. My daughter vm was found at my 20 week scan measuring then 13.1 and 15 and down as moderate_severe had to have 2 weekly routine scans then had mri which showed measurements at 15.8 and 17 so in the severe side I was offered termination and amniotic but turned both down I was also told my baby had situs inverses she was born at 37 weeks with a hc of 31.4cm but by 11 days her head was at 32.7 cm however her mri scan seemed positive with no increase and is back on the 14th Sept 17 for follow up with hc done every 2 weeks up to the appointment I’m a worried mum as her head grew to the amount it should grow in a month in just 2 weeks so my worry escalated plus with her situs aswell it’s even more worrying but I remain positive as right now I have a happy healthy baby girl to enjoy love and cherish. Can’t wait to hear your outcome x

  • Wendy

    I have never heard of this. Really hope all works out at the next scan and little Dexter is ok. He is a little beauty, you must have been going through such a scary time xx #BlogCrush

  • Alice

    I had my ultrasound last monday, 28 weeks pregnant. They noticed the size was 10.7mm on both sides. They sent me to the hospital and there they did another ultrasound.
    Same size was found. I had to give blood for checking if I had a virus during my pregnancy. The results of the bloodtest will ready in 2 weeks. I have to do another ultrasound in 2 weeks, july 13th. The 1 thing you should not do is google, but I did and now I am very nervous and scared that my baby suffers from something realy serious. Why didn’t they notice it when I had the 20 weeks ultrasound? What is going to happen now?

    I am glad I read your and Dexters story.
    There is so little information to find….

    • Readyfreddiego

      Hi Alice, I felt the same,
      It rocked my whole world and we were
      Worried sick. Google doesn’t give you the whole Picture and we were only told negative things. Our 20 Week
      Scan was fine too. We were told by one doctor that although it can be serious is can to be just as similar as someone having big feet or a big head, but the emphasis was also out on the negative. Please stay positive, I know that seems impossible as I too worried until dexter was here. I’m sure you will be offered an MRI scan if the measurements increase at the next scan. Also worth remembering how it’s difficult to get a clear measurement with baby wriggling, it could have been in an odd position! Let me know how you get on please xx

  • Jenny

    Hey there! Thank you for sharing your story! We’re pregnant with our second and just had our fetal MRI, as we were diagnosed with ventriculomegaly at our 20wk ultrasound. Based on the MRI, the ventricles were 12 & 13mm, but it appears to be an isolated case as nothing else has been found. I hope you don’t mind me asking a few questions, and I SO appreciate you just taking the time to read this. With your son, the doctors saw a decrease in the size of his ventricles while still in utero? We have been praying hard for this. Also, I feel like we haven’t been able to get a clear read on the neurodevelopmental outcome for our baby. You had indicated (and I realize this was a few years ago now) that everything checked out fine right after birth – has this continued to be true? I guess I’m wondering what to expect in terms of developmental delays, or even the possibility of the ventricles growing post delivery. Anyway, thank you again, so much, for sharing your story and offering up some hope to others going through this.

    • Emma

      Hello 🙂 your case seems really similar to us. Dexter’s vents stayed the same in utero except for one small fluctuation but when he was scanned once born they had slightly decreased just borderline normal range. He has had no delays and it fine – very cheeky and always knows how to get what he wants! Please update me on how things go for you, lots of hugs x

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