6 month old - large head - Ventriculomegaly

[Gavala]

Hello,

At 8 weeks it was picked up that my daughter's head was off the chart, she was referred to consultant paediatrician who arranged a ultrasound scan, MRI and ophthalmology appointment.

It was found that my daughter has bi-lateral ventriculomegaly, and enlarged third ventricles. The ventricles are currently under no pressure and there are for now no developmental concerns.

I measure her head weekly and she is following her own line, although it is consistently 2cm above the 99th centile. Her head is still growing. Currently 46.8cm at 6 months.

We are currently waiting for an MRI under general anaesthetic so that they can get better images but the waiting times are really long, and I've been told that covid has increased this - in normal times she would have been seen in December but it now probably won't be until April, when she will be 9 months.

I just wondered if any one else has been through this? And I guess I'm looking for some support.

Her head is noticeably big and although she seem happy, eating well and sleeping well, I still have a constant level of worry that I may not spot something that is sign of things not developing properly internally.

Any insights welcome.

From an anxious mum

Bumping

DS2 was premature and developed hydrocephalus which can be common for premature babies. I had to measure his head regularly and he was off the charts too. But his enlarged ventricles were caused by pressure so not sure if that’s the same as your DC. His head size grew bigger over six months - it didn’t follow the same line, it just kept going up. He needed an operation to fix the hydrocephalus and this was successful. The ventricles are still enlarged but haven’t affected his development. Doctors said there are probably lots of people with big ventricles, they just never have an MRI.

It must be very worrying for you. But if your baby is eating, sleeping and responding to their surroundings I think you can be reassured by that.

@Anselve thanks so much for responding. Really glad to hear your son was fine - it's reassuring to hear. Yes they said that her CSF fluid seems to be circulating fine (although there is a lot of it) - there is no obstruction which could lead to build up of pressure for now.

Are you at a point now where it's not something you worry about? I.e. has the issue been resolved?

The neurosurgeon thinks her head growth will start to slow down over the next year, but wanted the MRI under general anaesthetic to check more precisely on what's going on. I'm hoping it's just another year of worry and then I can put behind us as it were.

DS2 had an mri under a general anaesthetic at a similar age to your DD. Stressful for us but not for him. It does give them a lot of information and rules things out. Anything related to the brain is scary but neurosurgeons see the same things day in day out.

DS2 has a vp shunt. His CSF was blocked so the shunt takes over that job. He had it put in aged 9 months and the neurosurgeon was pretty blunt that he needed one once she saw him and the charts of his head size from birth. He will have it for life and has yearly checkups. I know that sometimes the shunts can break or get blocked and need further surgery but he’s never had a problem.

I remember very well how scary that time was and the feeling of waiting and watching to make sure he was developing properly. But he is now a hilarious, articulate 11 year who gives his older siblings a run for their money.