Hydrocephalus - Advice/reassurance needed

[k4mi]

Hi all,

I went to the Drs yesterday for my 6 week check up with my DD, she is actually 7 wks old.

All was well except that the Dr seemed concerned her head was a slightly unusual shape (possibly slightly oblong / high forehead (more obvious as she's balding!!) Anyway it measures as normal (around 70th percentile) and has always been in that region during scans since the beginning (i had 5 scans). In relation to the rest of her this is bigger, her height is the 60th percentile and weight is 9th percentile so basically she is tall and thin (as both parents are).

The other thing she is doing is looking down a bit, i think they call it 'sunset eyes' she does this every now and again but also looks up, from side to side, focuses and follows objects.

From what i can see she has no other 'symptoms' of Hydrocephalus. She seems happy, content, is meeting development milestones etc. Has had no sickness, irritability etc and fontanelle seems fine.

I just wondered if anyone who has had a baby with HC could tell me what the signs were for them (if there were any) and when it was picked up? If they have the sunset eyes thing is this normal to an extent but worrying if they d it all the time or just something that babies with HC do and not healthy babies?

The other thing is the Dr said the appointment with the paedeatricians could take up to 18 weeks!! which worried me as surely if something is wrong the sooner then better to risk any damage being done?

Usually with hc there is some problem at birth, such as bleeds into the brain) prematurity, or brain operations for eg tumours.

Headache, vomiting, drowsiness are symptoms, amongst others.

No personal experience but a friends DS had a brain tumour at birth and has a shunt for hc. If there is a problem it is not a good idea to wait.

DS2 has hydrocephalus caused by bleeds on the brain due to prematurity. The NICU did routine scans that picked up the bleeds and then regular head circumference measurements that showed his head was growing too quickly - within weeks he was off the chart.

But it took a long time to assess whether the bleeds had obstructed the CSF flow in the brain and I measured his head (I had a special chart) over months. Instead of following the curve of growth, it went up steeply. At 6 months we saw a neurosurgeon and she said he had sunset eyes - he didn't follow objects above his eye line.

The only other thing I noticed - they don't do much babies! - was an involuntary twitch in one of his legs. He also only kicked one leg in the bath. It was quite subtle but we were looking for it. This was where the swelling must have been pressing against the part of his brain that controlled his legs.

There are often threads about babies with big heads on MN and it always turns out to be their dad had a big head or just one of those things. I'm sure if the doc was worried he would have referred you on. I hope I'm being reassuring as my post is quite heavy on the HC info. DS2 has come through it all and is healthy and hitting all his milestone at 2.9.

My friends baby had this, I think at few weeks old they started to notice problems.. Very unsettled crying all time, eyes rolling around and his head literally grew within days because of the fluid building up so something was very obviously wrong.
I think if there was a problem it would present quite quickly and as you say there are no other major symptoms.
xx

Baby sister had hydrocephalus, she was an unsettled baby with a piercing cry, her head grew rapidly and she had little head control. It was very clear very quickly that she was a poorly girl.

Thanks for all the advice / comments. From what's said I don't think HC is the problem...of there's any at all but it's also good to know that if it is it can be treated / fixed!

Can't be cured but can be treated, I have HC, have since birth and my mum tells me the "symptoms" I showed were my fontanelle started to bulge and widen and also went slightly to one side it was first noticed at 7 months and i finally got my shunt fitted at 15 months.

My head was also large from birth (I was off the scale on head circumference, it started to rise again at 7 months, it was considered fine providing it kept the same curve, when it began to rise that's when my parents and doctors knew there was a problem).

I, however am perfectly fine, have a child of my own (who also has a big head, and has to be taken for regular measurments to be on the safe side, as it can be genetic) but I wouldn't worry too much as both my brothers had heads off the scale to obut were fine.

Hope this helps