WHAT IS VENTRICULOMEGALY, AND HOW WILL IT AFFECT MY BABY?
You go for an ultrasound, you hear "the ventricles are enlarged", you think "and?"...
You come home and search the net, find out this is called Ventriculomegaly (ven-tric-ulo-megaly) and then frantically search for all the information you can find, which is mostly hard to read medical stuff and your head starts to spin with all the contradictions and variations in findings. That's what happened to me anyway, and I know I'm not alone.
VM FORUM - A GODSEND!
Before I go any further - there IS a place where you can read what REAL MUMS are going through...this has been invaluable, re-assuring and the reason this lens is here. Make sure you head over there.
WHY THIS LENS?
For now, this is the quickest way to pull all the scattered information together and unite all those mums who are left in a spin by the news their baby has 'this thing' called ventriculomegaly.
SO MUCH TO GET OUR HEADS AROUND...
The info and advice we get is all over the place! We read and discover that...
VM can be isolated, borderline, mild, moderate, often mixed in with Hydrocephaly, bilateral, a hard marker for Downs Syndrome, a sign of brain abnormalties, caused by infections like toxoplasmosis...there's a lot to get organised on here!
DISCLAIMER: there is lots of variation in the advice and counselling you will receive, the aim of this site is to bring as much info together in one easy-to-find place so that you judge for yourself after reading all the information, talking to other mums and listening to your Doctor and medical team's opinions.
All the best x
P.S. GOOD NEWS FOR A CHANGE...
Most of the information out there - and from the professionals - is very bleak.
As well as my own daughter being fine and with no sign of developmental delays, I recently came across this lady's blog post about her own VM experience, and her daughter is now at school doing fine
There is even less information about post-natal VM experience, so that we can see exactly what we are likely to experience, but at least our cases show it's not all doom and gloom.
Most babies with VM will be fine...
Measurements can come down...
Even severe VM can be treated with a shunt...
Dr Recommended Information
These were given to me by the Dr who did MRI, as resources with "reasonable information" in them - when I get chance I'll put them in a proper link list :)
Blogs from VM Mums
Many of us have blogs, this is a list of those blogs that might get missed by the other 'Google Blogs' search.
Conclusions from Large UK Study - Isolated VM
Outcome of 167 fetuses diagnosed in utero as having apparently isolated ventriculomegaly
This is one of the links my Dr gave me - it's one of the largest studies I've seen (167 babies) and it's written clearly.
If you read it, and recommend it, please use the voting section to vote it up the list.
When apparently isolated ventriculomegaly is identified on the initial anomaly antenatal ultrasound scanning, parents should be counselled that the majority of fetuses will progress to a normal developmental outcome. Isolated ventriculomegaly should continue to be classified as resolving, stable or progressive and as mild, moderate or severe but the prognosis assigned to each category is only applicable in the absence of further defects. If isolated ventriculomegaly is found to have complicating abnormalities as in approximately one quarter of this series, a significantly worse outcome is indicated. Male fetuses may have a greater mean atrial width than female fetuses as suggested by previous studies [2,3]."
- Etiology, Prenatal Diagnostics and Outcome of Ventriculomegaly in 230 Cases
Karger is a medical publisher, scientific publisher and biomedical publisher of print and online journals and books.
Maybe we could add our cases here (by forum name) and include a link to our profiles on the VM forum?