Ventriculomegaly

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This topic contains 2,811 replies, has 407 voices, and was last updated by  raminta 8 months, 2 weeks ago.

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  • #10786018

    fbaby2017
    Participant

    Have any of you had ventricles measuring at 14mm go down before birth? They measured this at 20 weeks.

    #10786027

    gingermom
    Participant

    Hi every one, it’s been about two years ago that I was reviewing the posts of this forum trying desperately to find a parent with a similar situation or experience to mine who can assure me there is nothing wrong with my little baby (little fetus those days!)
    Mild, isolated and non-progressive ventriculomegally (12.5 mm) was diagnosed in our case at my 34 weeks. My daughter was born after 5 weeks and was being monitored by a pediatrician neurologist for 18 months. She is now 21 months and I’m glad to say that she is perfectly fine. She has met all the milestones so far on time, can walk, run, talk like a 3 year old (her pediatrician’s opinion). She started to walk at 16 months (a little bit late in my opinion but both the neurologist and pediatricianist believed that it was fine and in the normal range of walking age) and in our last visit when she was 18 months the neurologist said that he is not concerned doesn’t need to see her any more.
    I cannot be more proud with her and I’m sorry that I let the damn idea of ventriculomegaly ruin the best days of my life with the shadow of doubt and fear. My message to all the parents terrified by the terrifying name of ventriculomegaly: Don’t panic and don’t lose hope! As long as its mild and non-progressive, I can assure you that there is nothing to worry about.

    Turtlemom: so glad to see you again here and thank you for all the support and hope you gave me those days.

    #10786827

    Anonymous

    1

    #10786889

    waitingboy
    Participant

    Hi everyone. I’m sorry we all met here bc our babies are having ventriculomegamy or hydrosephalus. My pregnancy was perfect unroll 30 weeks ultrasound. Now I’m on week 33… My boys ventricles are 16mm both. They are stable for 2 weeks. MRI shows normal developing and blood test did not show any infections, DNA testing on week 12 didn’t show any syndromes either. The reason is unknown.. I was crying for two weeks, now we just waiting.. it’s sad this forum has only beginning of the stories and only few women told the outcome. I wish all the babies to be healthy and happy. It is so important to value every day and our spouses, support means so much. Please share your experience who had similar situations.. bless everyone of you.

    #10786890

    kristina1467
    Participant

    Hi Waitingboy and everyone else. I want you all to know that it isn’t all doom and gloom. Ventriculumegaly could mean nothing or it could turn into hydrocephalus which isn’t the end of the world. Matthew was born in October 2016 (a little early) with hydrocephalus. He was shunted a week after that. He’s doing great now. He is a little developmentally delayed but that’s because he has more than just hydro going on (he has some other congenital brain malformations which are very rare. It was also picked up somewhat at our 20 week anatomy scan). The worst part about all of this is the unknown during pregnancy. Once your baby arrives the sky opens up and the rainbow appears. Hug those bellies tight and enjoy every minute! Try not to worry so much. I know it’s easier said than done but trust me, you are going to regret being such a worry wart after the baby is born. And yes, TurtleMom is an amazing resource! If your kiddos end up with hydro there are several groups out there to help you along the way!

    #10786893

    Jasminko
    Participant

    My Husband and I received very upsetting MRI results surrounding our babies brain/VM measurements on Feb 12th which turned out to be wrong. The last two weeks have been hell for us. We flew down to San Francisco last weekend and had back to back meetings with Dr. Audry Foster Baber(https://www.ucsfbenioffchildrens.org/audrey.foster-barber) a fetal neurologist who specializes in VM’s on Monday and Tuesday to learn more about ventrikulomegaly. Our first neurologist at Ceders read the VM to be 14mm which is borderline sever for brain damages. Chris and I were devastated. We then started to question the original results and planned our trip to SF to talk with a fetal neurologist that specializes in VM’s. On Monday I went in for another MRI and ultra sound with “state of the art” new MRI machines at UCSF. The results were normal with healthy brain function!!!Dr. Audrey Foster Barbra from UCSF is the only fetal neurologist that specializes in VM’s in California which is shocking. I can’t imagine the families that don’t have the financial means to travel or insurance to see her and then go through with a late termination. Chris and I cried then she told us the initial readings was wrong. The babies head was on a tilt which made the pocket of fluid look a lot bigger in the MRI. Dr. Audrey actually told us there are few radioligist and Fetal Nuro doctors in America that can read VM MRI’s properly. It’s been such an intense journey…not to mention I had a kidney infection through all of this which is slowly repairing itself. I wanted to reach out to you all of you and say ” your not alone” and ALWAYS get a second option. Dr. Audrey see’s new parents from all over the world and she mentioned to us that she might start doing skype sessions with patients. Please reach out to her and her amazing team to get a second option.
    Sending you all strength and love.

    Jasmin and Christopher.

    #10788928

    raminta
    Participant

    Hello all. Want to share my story and maybe hear if someone had similar experience. I went to usual scan during 28 weeks pregnancy when my doctor was so worried and immidiately sent me to another hospital where I had another scan. Doctor wasn’t able to see corpus collosum, also ventricles were enlarged. So they made an appointment for MRI two weeks later when I was 30 weeks pregnant. Waiting for MRI was crazy. I kept praying but MRI results didn’t gave us much hope. The results we received….:
    Fetal head normal size.
    On both sides of the silvia furrow, there are deep furrows, communicating with the liqueur between the subarachnoid space and the ventricles.
    The ventricular system is moderately hydrocephalic, with more prominent occipital horns and ventricular cavities, width ~ 14 mm.
    3 and 4 ventricles with typical plaque and shape.
    Corpus callosum is there, but very thin.
    Surface is frontotemporoparietalis smooth and subarachnoid furrows are not separated, which should be visible at 30 weeks. gestation.
    The structures of the middle line are not displaced.
    Basal tanks differentiate.
    Retro-bar spacings are structural, not visible in retro-barcode.
    Brain is full.
    There was no intracranial finding of hemorrhage and SI restriction in the DW (dear wife) mode.
    Frontoococcal dimension 79.7 mm (75-95mm norm).
    The bipartite dimension is 61.0 mm (57-72 mm

    Conclusion: on both sides bilateral open lip schizzencephaly furrows, probably pachygyria. Also mild moderate hydrocephalia.

    Sorry if there is a translation mistakes, as I tried to translate it from my language to English.

    I just want to cry and die. I am 33 weeks now and still lots of to wait until the child is born….

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