Anyone with Ventriculomegaly?

[elliejjtiny]

DS4 (6 months) was diagnosed with severe cleft lip and palate at my 20 week scan. He was born at 35 weeks and diagnosed with hypotonia and mild ventriculomegaly the next day. He had a repeat MRI at 5 months and the ventriculomegaly is worse so we have been referred to the neurosurgeons at frenchay hospital in Bristol. Has anyone else had this with their DC? He seems so different from other babies his age. His due date was 3 days after DS1's birthday and I was looking at the photos of DS1's first Christmas. He was almost sitting up, playing with toys etc but DS4 mostly just lies there, smiling at the lights.

He had some problems with feeding and weight gain but that's a lot better now but now he is bigger the development delay is more noticeable.

I hope this was the right place to post. Wasn't sure if I should post it in childrens health but I post here for DS2 and DS3 who have hypermobility anyway so I know this board.

Hi ellie I dont know anything about your Ds4's condition sorry but I didnt want your post to go unanswered.

The board is pretty quiet today so maybe someone will be around who knows something another day.

Keep bumping your post.

Good luck

Hi elliejjtiny, I used to work in neurosurgery so know a little about ventriculomegaly. It literally means 'big ventricles' and is a sign that there is a build up of cerebrospinalfluid (CSF) in the ventricles.

CSF flows around the brain and spinal chord, protecting the brain, giving buoyancy, getting rid of waste materials from the brain. It's produced in the brain, then gets reabsorbed constantly throughout the day.

When the CSF builds up in the ventricles there are several potential causes - sometimes it doesn't drain efficiently, sometimes there's a blockage of some sort which hinders the flow of the CSF or other causes.

Lots of times the ventriculomegaly is 'benign' (ie. causes no long term effects and doesn't need treatment). In some babies/young children, there are symptoms and if a surgeon thinks the baby/young child would benefit from treatment, they insert a Ventriculoperitoneal shunt, which is a tube that goes from the brain to the peritoneum, draining excess CSF into the abdominal cavity, where it can be disposed of. There are other operations that can be performed depending on the cause.

Hi Ellie. My DS4 had borderline ventriculomegaly in the womb. He was scanned at 6 weeks and it had dispersed. I do feel that it is the reason for his Autism. He was late doing everything and is non verbal. He is nearly 7 now.

Thanks everyone. DS4's ventriculomegaly was borderline at birth and then worse at 5 months. Lougle our local paed was saying he may need a shunt but didn't really explain what that involves. Would a shunt usually work fine without causing problems? When we were in frenchay last time there was a little boy who was there because his shunt was blocked and he seemed to be in a lot of pain, poor thing. I'm hoping that would be a rare complication and not something we would expect to happen regularly.

Sally My DH has been concerned re autism because DS4 doesn't make eye contact but he has AS and so he tends to look for "symptoms" in the DC.

He was a poor feeder and would rock his head from side to side to get to sleep as an infant. He used to throw a muslin over his face to sleep. He still rocks his head when stressed and/or tired. He was slow to sit up, roll, crawl, stand, walk. He doesn't speak, has poor fine motor skills, fleeting eye contact, no sense of danger, walks on his tiptoes, used to grind his teeth, limited diet, not dry, has bowel issues - the list is endless.

A shunt is usually very effective. They are really clever and the Medics can control the amount of CSF they drain by adjusting a valve with a special tool externally.

A blocked shunt is a complication -the headaches would be because all of a sudden the CSF wasn't draining and the pressure causes the headache.

There are different types of shunt and different locations where the shunt can be routed to - either the heart, lungs or abdominal cavity. The surgeon tends to decide what the best route is, but the effect is the same.