Borderline bilateral ventriculomegaly at 22w - support thread!

[doushy]

The best of luck stargirl hope your getting through this weekend, as quick as possible xx

Thanks for looking about for me Tulip. I have looked around various websites and forums, some have been helpful, some not (as you can imagine). Thankfully the only markers on my scan were the cpc and the exomphalos (which are markers for edwards). Everything else showed as normal.

All i can do is keep everything crossed. Thank you xx

 

[Tulip]

Keeping it all crossed here for you too

 

[stargirl77]

Hello I had my appointment today and the vent is measuring normal. Such a relief.many thanks for all your reassurance, accounts and kind words.XX

 

[Tulip]

Hello I had my appointment today and the vent is measuring normal. Such a relief.many thanks for all your reassurance, accounts and kind words.XX

Fantastic news! Congratulations, enjoy the rest of your pregnancy and motherhood

 

[doushy]

Hi

I thought id best update. Unfortunately it was confirmed yesterday that my baby boy had edwards syndrome. Although the odds were bleak i held on to some of the statistics (mainly affecting girls, hands being clenched when our baby had open hands a lot).

I have decided to TfMR and i had a tablet and injection yesterday and will deliver tomorrow. Hopefully one day i will get my rainbow baby!

Thanks for your support girls xx

 

[Tulip]

I'm so sorry darling, the soft markers weren't promising but like you say there was still hope. Am heartbroken for you. Will light a candle for your little boy and think of you tomorrow xxx

 

[nickibrum]

Oh so sorry to hear that Doushy. Ill say a prayer for you.

I had our scan today and for once has some good news; the bowel isnt concerning the consultants anymore, and the ventriculomegaly is still borderline. Its stayed consistent so no more scans needed for us.

 

[Tulip]

Good news nicki, FXd it remains stable now xx

thinking of you doushy xx

 

[Physiomom]

I'm so sorry to hear that. Take care.

 

[ilovemyharry]

hi ladies,
just wondered if i could join this thread!
i have recently (tues) lost my lil boy to severe ventriculamelogy at 21 weeks!
was absolutley horrible!
basically i just want to chat to u ladies really!
i think my lil boys condition was abit different as they still cant detect exactly what has caused it yet but his brain wasnt developing so they told us there was no hope for him, hence the reason we delivered him on tues!

i just want to know if anyone has gone on to have a healthy lil one after loosing one too this condition?

thanks xxx

 

[Tulip]

hi ladies,
just wondered if i could join this thread!
i have recently (tues) lost my lil boy to severe ventriculamelogy at 21 weeks!
was absolutley horrible!
basically i just want to chat to u ladies really!
i think my lil boys condition was abit different as they still cant detect exactly what has caused it yet but his brain wasnt developing so they told us there was no hope for him, hence the reason we delivered him on tues!

i just want to know if anyone has gone on to have a healthy lil one after loosing one too this condition?

thanks xxx

Oh my goodness I'm so sorry for the loss of your little boy

Kaden's mummy has a rainbow baby I think, lemme check xx

 

[Tulip]

Yes, mommy2kian lost Kaden's to vm which just kept getting bigger and prevented his brain from developing. She now has a healthy wee girl xx

 

[ilovemyharry]

oh thats good news!
i mean we allready have a healthy 3 year old just really worried it will happen again!

is everyone on here going threw vm or gone threw it?

xxxx

 

[Tulip]

We've all had an intial diagnosis of VM - some have been measuring errors, some have resolved spontaneously, some have progressed xx

 

[ilovemyharry]

thankyou...its so nice to find people going or gone threw the same thing finally!

 

[sailorwife]

Can I join this thread too? My daughter is 11 weeks with ventriculomegaly. Diagnosed at 20 weeks pregnant. Last measurements were 14 each and an absent septum pellucidum

 

[Angelinheaven]

hello ladies i am new to this thread. i really need your help.

at 26 weeks, i was diagnosed with ventriculomegaly. my doctor saw some little fluid at 24 weeks but then it gone up to more than 15 mm in two weeks and a half.

can someone please tell me what i should be prepared for? what should i expect? can my baby live a normal life? any one experienced this?

 

[Tulip]

Welcome to our two latest arrivals AIH I think the only person currently on the thread with a baby who has ventricles of that magnitude is sailorwife. From what I've read its very difficult to predict the outcome for a particular child - it depends whether the vents continue to enlarge (and indeed the cause of the vm) or reduce and how much this hinders the growth of the brain. The scale of disability can go from no obvious mental or physical deficit, through mild and moderate learning difficulties to severe brain damage.

Has your doctor conducted TORCH screening and a foetal mri to try and establish the cause of the vm? It may be possible to deliver early and perform a shunt to drain the excess cerebrospinal fluid.

Sailorwife, can you tell us more about your little girl's story? I bet she's a wee cutie

xx

 

[Angelinheaven]

yes i just did an MRI and amnio test but still waiting for results. doctors think that the vents will continue to enlarge and there's part of the brain that is not well developed. i feel so devestated. i really dont know what to say. i was also told to have early delivery through a c section.
please pray that my little girl will live a normal life. i love her so much

 

[Angelinheaven]

Can I join this thread too? My daughter is 11 weeks with ventriculomegaly. Diagnosed at 20 weeks pregnant. Last measurements were 14 each and an absent septum pellucidum

can you please share your story with us? i feel very upset. my daughter is diagnosed with severe VM at 26 weeks. i really dont know what to say