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.


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!


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.

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.


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?

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