Ventriculomegaly

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  • #6991616
    Profile photo of Aliyahsmommy
    Aliyahsmommy
    Participant

    triciah, I was on your page and I see that the vents didn’t enlarge with your baby until the 35th week and are stable now at 38 mm. Does he have further scheduled testing, what is the update for him?

    #6991872
    Profile photo of salem13
    salem13
    Member

    At our 19 week scan we found our little boy was diagnosed with Ventriculomegaly..I was like what? I’ve never heard of that in my life. WE don’t smoke, drink, we eat excellent found and live a very healthy lifestyle. We go on hikes for 1-2 hours how can this happen. I was in tears until my mom found this website and I was inspired. I love everyone’s support on this website and hope I could find others like me in this situation. My baby boy’s vents are 15mm & 16mm. They are pretty large and hope it will correct itself or we’ll have to get a shunt put in his head. We go in for an MRI this Wednesday and then meet with the Pedatric Surgeon the week after for the results and the consultation. I am 5 months pregnant and my little boy is so happy bouncing around and dancing in my tummy:) I hope all goes well:) I anyone has had a child with the same size vents couldyou please let me know how it went.:) Thank you, Tricia

    #6992128
    Profile photo of Jess2008
    Jess2008
    Member

    I can’t find someone that has disappeared from my old messages! She lived in the UK and her little boy was born last fall and was named xavier. She had tons of problems getting him treated right after he was born and then he wen to the children’s hospital and got a shunt. Later on he had some problems and ended up back in the hospital. I wanted to find her and see how her little one was doing. Does anyone form last fall remember her?

    #6992384
    Profile photo of twoonboard
    twoonboard
    Member

    MarieG – you are so right. My twins were born yesterday, a year ago. The time I spent in torture was unthinkable, I was a state, I dont know how I managed to make it through the early days. If I knew then what I know now I would not have wasted my energy, it would have been best spent doing something far more productive. Regardless of outcome, things generally look better in hindsight and children are continuously surprising regardless of prognosis, doctors are rarely able to predict accurate outcomes in these cases. I wish that I had had more faith in my son than in what I felt was being said to me by the medics. BabyCarl – cry if you need to, it is healthy and a release of emotion, this is a period of grief, for the pregnancy that you thought that you might have is different now, just do not give up talking even if you repeat yourself. The member of the forum are more than happy to listen and really hear what you are saying because we are either going through or have been through the same cycles. Best wishes to you all XXX

    #6992640
    Profile photo of Salmasmom
    Salmasmom
    Member

    Since my las post here on June 4Th I haven’t seen my OBGYN…I have so much problem wIth the insurance and because of that my doctor refuse to see me at least I pay $3000 for every visit. I have been traferred to 4 different hospitals with no success even don’t know if my baby girl is ok. She moves a lot and I think that is a good sign telling that she is fine.
    I’m praying every day that her ventricles are not growing. After fighting so much with medicaid I got finally approved and now on the 21th I have finally an appointment, let’s see what the doctor will tell me.
    This site has been such a good support, and I will keep all of u on my prayers.
    I’m 34 weeks and I can’t wait till this all over.
    May God bless all of you.

    #6992896
    Profile photo of Deedee26
    Deedee26
    Member

    Haven’t been here for a while! An well I got a bit of bad news today when I had the scan doctors said that even though the front is 11mm and the back is gone from 16mm to 25mm so I was told that she is going to need a shunt an she is more than likely to have problems. To say that am very upset since the last time they told me it hasn’t increase just to find out that it actually wasn’t measured so they had to compare it with the first scan. It’s very disappointed an now I have the scan every 4 weeks since I was told that there is nothing they can do I just have to wait till she is born but 7 weeks is such a long time

    #6993152
    Profile photo of Katieandiggy
    Katieandiggy
    Member

    Cheffreda- personally I stayed with my regular consultant. I didn’t know about my baby’s vent until 34 weeks. I had a 28 week scan at a fetal medicine centre and that had a good look inside the head then and all was fine. It was only at a routine growth scan it was picked up. I had already had a CVS in first trimester which was clear, my consultant arranged a TORCH test and that’s as far as ive taken it. I’m going to have this baby no matter what so I will just be consulting with a pedi when he is born.
    How far along are you? If it’s something that’s come up early in pregnancy may be worth going with a high risk OB.

    #6993408
    Profile photo of laila10
    laila10
    Member

    Hi turtulemom, thank you for answering, actually I´ve asked the doctor about Microcephaly and he said it is not the case, he is suggestion an MRI to know if there is a damage in the brain tissues! I cant´imagine my baby with a disability, every thing was going excellent during her first year of life, but it is turning so bad now!!!

    #6993664
    Profile photo of TurtleMom
    TurtleMom
    Participant

    agilbert, I’m sorry that there isn’t a decisive answer right now. I would try to push everything aside and love the little bambino growing inside of you either way. I’m inclined to think it is AS because the vents are increasing. But, that is just a guess. If it is lobar HPE, that is the least problematic and I know of at least two little ones that have Hydro and lobar that are doing well. Whatever the outcome, you can do this and I promise you will love your baby like nothing else once he is here. Try to enjoy the rest of your pregnancy. Have a baby shower and relish the time you have.

    #6993920
    Profile photo of TurtleMom
    TurtleMom
    Participant

    Lana-wa, anything under 10mm is normal. Your baby is perfect. Blessings to you.

    #6994176
    Profile photo of GandJplus1
    GandJplus1
    Participant

    Just wanted to leave another update on my now 18 month old with VM. She is doing so wonderful and is developmentally perfect. She is running, climbing and talking a ton. Her VM was first seen at my 19 week sono and never resolved. She had a CT scan in December (due to an unrelated minor head injury at day care) and it was visible that her ventricles remain enlarged. The doctor came in after the scan and said that there was no bleeding or any concern from the fall but I should see a neurologist because of enlarged ventricles. I explained that she has had this issue since the first scan on her brain in utero and I would not be following up with a neurologist. I don’t know if they are required to refer to a specialist with these findings, but the neurologist she formerly saw had no concerns.
    I know someone asked about having other children and if they also had VM..for me just 1 out of 3 has this diagnosis so I doubt it’s a genetic thing.

    #6991617
    Profile photo of deziree
    deziree
    Member

    i went to the doc today to go over more of the mri i had last week… it is not hydrocephalus, but severe ventriculomegaly and small cerebellum… the worse news is the vents are working properly but filling up due to lack of brain tissue…. at this point it turned from what could turn out good after shunting to worse beacause the baby may not need the shunt because the extra fluid is just making up for the parts of the brain that didnt develop… they also said that because his HC is within normal range and hasnt expanded he could develop microcephaly whitch they said has a worse outcome…. 🙁

    #6991873
    Profile photo of i-am-pregnant
    i-am-pregnant
    Keymaster

    hello everybody, im new to this. had my 20 week scan 3 weeks ago and baby venticles were 10.8mm a week later they were 9.2mm and then yesterday when i went back they were 10.8mm again the consultant has offered me amnio and mri scan and i jst do know what to do!! Any advise?? x x

    #6992129
    Profile photo of Havingfaith
    Havingfaith
    Member

    Was her name Sheryal? u can find her on page 7 towards the bottom x

    #6992385
    Profile photo of triciah
    triciah
    Participant

    babycarl….marieg and two-on-board are right on the money..well said

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