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Fetal Ventriculomegaly

Updated on July 31, 2010

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.

Remember...

Most babies with VM will be fine...

Measurements can come down...

Even severe VM can be treated with a shunt...

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.

"Conclusion

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]."

Read study here

Maybe we could add our cases here (by forum name) and include a link to our profiles on the VM forum?

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      Krissy 2 years ago

      Hi I found out at my 20 week scan my baby has ventriculomegaly which is severe at 19mm, has anyone else decided to carry on with their pregnancy with it being severe? If so what was the outcome for your little one x

    • profile image

      didalid 6 years ago

      @anonymous: hi my daughter who is now 9 years old has vm, she has special needs and goes to a special school im so glad i have found this site may be i can help people out there who needs a talk thank you lisa

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      anonymous 6 years ago

      Many conditions associated with ventriculomegaly can be defined prior to birth, but the possibility remains of other anomalies (either structural, chromosomal or genetic) only being identified later in pregnancy or after birth.[6] Ventriculomegaly associated with abnormal findings and other structural malformations, often has an adverse prognosis, which ranges from disability (often mild) to death. However, in cases of mild isolated ventriculomegaly, there is around a 90% chance of a normal outcome.

      CRGH

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      anonymous 7 years ago

      @anonymous: Hey Turtlemom - good to hear from you! You and the others were a massive source of support exactly when I needed it...over 2 years ago! I can't believe she is almost 2 after the rollercoaster that I had. Thanks for posting!

    • profile image

      anonymous 7 years ago

      This is my favorite source for valuable stats - http://www.obfocus.com/questions/qanda10.htm

      "Isolated mild ventriculomegaly may be expected to remain unchanged in 60

      percent of cases and to resolve in one-third of cases. The ventricles can be expected to enlarge in approximately 8 percent of fetuses.

      Isolated ventriculomegaly greater than or equal to 12 mm is associated with normal neurodevelopment in approximately 77% of cases. Whereas isolated ventriculomegaly of less than 12 mm is associated with normal neurodevelopment in 97% of cases."

      Those are the most accurate stats. It is even more realistic that what I hear most doctors telling patients. My daughter was born with sever Hydrocephalus (what happens if Ventriculomegaly turns ugly). I'm happy to help anyone that needs info - Amybhendrix@yahoo.com or Amy Whisler Hendrix on Facebook. I'm also Turtlemom on the i-am-pregnant.com site that is referenced below. Our complete story about my miracle daughter is chronicled there.

    • Web-Wahm profile image
      Author

      Web-Wahm 7 years ago

      @anonymous: I'm truly very sorry to hear that, and I never know what to say but hope that you will be ok x

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      anonymous 7 years ago

      Thank you for this site. My baby was diagnosed with isolated severe ventriculomegaly a measurement of 27mm. The outcome was devastating and was incompatible with life.

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      anonymous 7 years ago

      Hi - the best place to go is the VM forum with other parents going through this...

      http://www.i-am-pregnant.com/encyclopedia/Babies/V...

      It was the source of many hours reading and brings you back to earth a bit because it's not all scare stories like the rest of the info on the web (mostly research).

      Good luck and I hope everything turns out well for you :-)

      [in reply to Baby Garcia # 4]

    • profile image

      anonymous 7 years ago

      Found out at 21 weeks the ventricals were slightly enlarged, went for second ultrasound and confirmed that they are enlarged and measure just slightly large, went for MRI few weeks later and found out that there was old bleed on the right side and this could be the major cause of the ventriculomegaly. Ventricals still measure large and are actually 17mm, went for third ultrasound today and all is confirmed from MRI, amnio is normal and all bloodwork normal, everything else for baby including the rest of the brain is normal. Anyone going through or been through this? Any advice would be great

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      anonymous 8 years ago

      on my daughters 20 week scan it showed she had mild ventrigularmegly which after a few weeks seemed 2 disappear, an amnio showed no abnormality and she was born healthy. problems started to appear when she was slow at reaching her milestones. she was nearly 11 months before she could sit and 23 months before she could walk. she has now been statemented by the education authority and attends a special teaching facility at our local school. katie is a happy healthy little girl who doesn't let her disability get her down.she is very loving and affectionate and i wouldn't change her for the world

    • Web-Wahm profile image
      Author

      Web-Wahm 8 years ago

      Hi Hugh

      Congratulations on your son! - so glad you had good news!

      Although we can't be sure why people stop writing about it, I know in my case and a couple of others it IS because it turned out to be ok - and we post occasional updates for the benefit of others in the future. The lack of information on 'what happens after' was a big issue for me and others on the forum at the time.

      Many thanks for your kind comments on this site, it was intended as a central hub for all the info and resources, so glad it worked as intended for you :-)

    • profile image

      anonymous 8 years ago

      We had a ventriculomegaly scare at our 20 week scan, with mild ventriculomegaly present, and had 3 follow up scans in the next month as a result. We didn't get much of an idea from the hospital of how worried we should be so we spent the next week browsing the internet and getting scared - there is so much information on the web on cases that turn out to be problematic/worrying, and almost nothing on the majority of cases - those that turn out ok (perhaps because parents for whom it stops being an issue stop writing/blogging about it?)

      It was fine for us in the end and we had a healthy son, Edward, last week. The neo-natal brain scan showed the ventricles as perfectly normal. This site (and in particular the two videos posted on it) was the most useful resource we found on the web.

    • profile image

      anonymous 8 years ago

      6 months update...

      Check up with Consultant today; Baby T meeting all the developmental milestones (rolling over, using both hands, following us around the room, attention to sound sources etc) and Consultant happy with her progress; one final brain scan to come and then she may be discharged.

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      anonymous 8 years ago

      very scared. just got news yesterday. baby at 19 weeks has 18mm ventricles. very severe. i am looking and praying for a miracle. go for an amnio next week...all other tests normal so far, including level 2 ulrasound. i just want the size to go down and get out of the "severe" category. please pray for my little guy.

    • profile image

      anonymous 8 years ago

      Quick Update...

      My little girl started with 11mm vents, progressed up to 15/16mm. I was told she had a 50/50 chance of mental and/or physical handicap, in varying degrees, including blindness and deafness. They even said she may not be able to look after herself and need a wheelchair.

      She is now 3 months old and there are no signs, as yet, of either mental or physical delays (in fact she started to smile and hold her head up EARLY). She is a perfectly normal looking and acting baby, but she still has enlarged ventricles up to about 14mm now.

      It's hard to think back at all the worry, it's like it never happened.

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      anonymous 9 years ago

      30 weeks and vents are now up to 16mm :( We are now into the severe category...not sure if this is now classed as Hydrocephaly or not, since the head measurements are fine. 50/50 chance now of physical and/or mental problems.

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      Dr_Joe 9 years ago

      Very informative.

      Great lens. Rated it 5 stars.

      Feel free to visit 4D Scan | 4D Baby Scans | Professional Clinics for 4D Baby Ultrasound

      because a healthy body is an investment.

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      anonymous 9 years ago

      hi girls,im 30 weeks pregnant and will have a csection in 9 weeks time,my baby has severe-abnormal fluid and not enough brain tissue,i did an mri during the week but don't want to know the results,i can't wait just 2 hold my wee baby ope u r all keepn well xxxxx

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      anonymous 9 years ago

      at 21 weeks, had my first ultrasound vents measured 12mm, 22weeks 13mm, 23weeks 15mm, 24weeks 16mm, 26weeks 15.6mm, 28 weeks 15.4mm, 31weeks 13.8, 34weeks 13.6mm. came down finally, yeah! had bloodwork for infections done, all normal, had 2mri's showed all else in the brain was well except the vents, and had the amnio which was all normal too! my childs is isolated ventriculomegaly, went from mild, to moderate, to severe at 16mm, then back down to mild/moderate at 13.6mm.

      Baby was born May 20, 2008, by c-section(not because of the VM), was 3 weeks early because i had severe high bloodpressure, was preclamptic, so i got induced at my 37week appointment.

      if anyone has any questions for me about my daughter feel free to ask on the VM forum, my name on there is dsryan.

      My daughter is doing well, she weighed 6lb 5oz, she has been seen by a neurological pediatrician, who says she is well, just mild VM, and she will go for her own MRI in July.

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      Web-Wahm 9 years ago

      zacs-mum

      Vents measured 11mm at first, discovered on 20 week scan. Had high risk of Downs Syndrome but amniocentesis showed all clear. MRI scan also showed no other problems. TORCH blood test also negative. However, vents have increased to 12-13 at 25 weeks, will keep being monitored to see if they keep growing.

      My Forum Profile