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My baby has Ventriculomegaly

4 replies

elliejjtiny · 24/12/2013 15:37

DS4 is 6.5 months. He had a cleft lip and palate diagnosed at the 20 week scan. When he was born he was diagnosed with hypotonia and mild ventriculomegaly. The paed said not to worry we will keep an eye on it. He has had his head measured every month and had another MRI last month. The results are back and the ventriculomegaly is worse. He has been referred to the neurosurgeons and I'm panicking.

When he had his cleft lip repaired he wouldn't wake up for ages afterwards and spent a few hours in HDU. He has got to have his palate repaired in March which I'm dreading and now they are talking about more surgery. He had his last 2 MRI's done without a GA but that won't last much longer as he gets more wriggly.

Also I'm due DC5 in July (very much unplanned, DH had snip booked). I don't know how that would even work as presumably DS4 will be needing surgery to treat the ventriculomegaly when I have a very young exclusively breastfed baby as well.

We have had to tell our families and got the usual tactless responses.

Has anyone elses child had this? I've googled (yes I know, I shouldn't have) but I've only seen stories about babies being diagnosed in the womb and either resolving on their own or the pregnancy has been terminated. DS4's ventricles were normal in pregnancy so it's different.

OP posts:
Sneezecakesmum · 25/12/2013 18:06

Will he need a stent putting in to drain the ventricles? I don't think this is as major as other surgeries. Bit of a nightmare for you at the moment. Sorry not to have been more helpful. Is there a Facebook support group?

Nerfmother · 25/12/2013 18:53

Ds had this, picked up at birth but didn't need treatment just monitoring. It's horrible as you don't know what, if any, the impact will be.

elliejjtiny · 26/12/2013 20:40

Thanks. Haven't checked for a facebook group, I'll do that now. We're not sure what treatment if any he'll need, hopefully the neurosurgeons will be able to tell us more. How old is your DS now nerfmother? The paed was telling us that they're not sure what's causing it, could be something, could be nothing. The waiting is driving me crazy.

OP posts:
Nerfmother · 26/12/2013 21:08

Hi Ellie he is six. We had a check that we asked for a six months and we had conflicting outcome ideas as well. He would be fine/ he might have sen etc.
he falls over a lot, but is fluently reading, very bright ( as in chirpy) and is a total delight. So, who knows?
Worrying times but the gp at the time when I was wobbling (we were offered all options) just told me to be guided by the doctors, that they would be there to look after us all whatever, and we kind of acted passive.

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