Ventriculomegaly

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This topic contains 2,811 replies, has 407 voices, and was last updated by  raminta 8 months, 3 weeks ago.

Viewing 15 posts - 31 through 45 (of 2,812 total)
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  • #6993666

    Aria1778
    Participant

    Thank you LDMusgrave for the new email address. I did try contacting Cassie and thought she may be very busy. Your little girl is beautiful and thank you for sharing her birthday video.

    #6993922

    i-am-pregnant
    Keymaster

    davjoyce4 – I just thought I’d respond because our situation was very similar to yours. My son’s ventricle measurements were the same as your baby give or take a millimetre and his head circumference was also about the same. The ventricles actually grew after birth to about 20mm before stabilising (and possibly reducing, but there’s no way to tell without another MRI). But after no developmental issues were observed, he was just assumed to have large ventricles with no blockage and we don’t have to take him back for anything other than the usual milestone checkups. He’s now 18 months old, can say over 40 words and caught a ball yesterday! So we have no worries whatsoever. There are no guarantees sadly, but I would say there’s a very good chance that your baby will be fine, especially bearing in mind the head circumference. I doubt anything will stop you worrying until the birth and beyond, but do come back and keep us updated. All the best, Tim.

    #6994178

    TurtleMom
    Participant

    mummy4812, are you positive it was only the 4th ventricle that was enlarged? Are the lateral vents not enlarged at all? If this is the case, I would recommend getting a MRI. That is a more unusual case. It is a very large measurement for a 4th vent. And, with no lateral vent enlargement, I would want a MRI to get better imaging of why that is. Best wishes to you and your baby!

    #6991619

    cpamom
    Member

    Ugh! Got bad news on my amnio results. Abnormality with Chromosome 8. Seems that this may be what is causing the Hydrocephalus in my unborn girl (31 wks). She will likely have some other problems as well, both physical and developmental. I was so hoping that the Hydro would be isolated. I am getting the idea that this is pretty rare. Haven’t run accross much in the way of rare chromo abnormalities on this board associated with Hydro or Ventriculomegaly.

    #6991875

    amandamartin2008
    Participant

    Hello to all…So many of you know that my sons ventricles measured at 11 @19 weeks. Today @ 23 weeks we measured at 7 & 8. PLEASE never give up hope. I heard so much about termination 3 weeks ago and look….it appears to have resolved itself. My heart goes out to so many of you that are living in fear and worry. Hang in there. I just hope that I can now touch someones life the way so many of you have touched mine. There are so many stories of hope and love on this website. I have to give a special BIG shout out to Two-on-Board. She has been a true blessing in my life. This website is the best. I will definitely continue to update and pray for you all. Best wishes to you and your little ones.

    #6992131

    linnyc1981
    Member

    partyoffive- so excited for your news. Keep believing in your bub 🙂 and you will meet him soon enough!

    #6992387

    zawichick
    Member

    Thanks BabyCarl–I will definitely go with the blood tests instead of the amnio. Even though there is a small part of me that wants to find out if it is related to a chromosomal abmnormality, I’m too concerned about the risk. And, i totally understand how you are going back and forth with emotions–I do the same thing! MarieG & two-on-board had some great advice. I too was very emotional at first–especially since our first little girl, who is 3 now, was colicky for 8 months (not all colic goes away in 3 months!) so this was supposed to be our ‘good baby’–good sleeper, eater–those ‘perfect’ babies I kept seeing other moms have! So after finding out about the VM, I was somewhat heartbroken thinking we couldn’t have a ‘normal’ baby. What turned me around was when I was reading this book called, The Spirit of Motherhood, and there was a story in there where a mom going through some tough issues kept asking ‘Why ME?’ and then she finally realized, ‘Why NOT me?’. After that story, I now think of it as a great privilege that God and this baby chose my husband & I–they knew although it would be hard, we would have the strength & will to provide the best love and care that this baby would need. And, having gone through the MANY months of colic with our first, I guess that has prepared me for these new challenges thinking we can get through this too! Remember, God won’t give you more than you can handle. And reading the posts on this board really put me at ease. Is this your first baby?

    #6992643

    tamarohbaby
    Member

    my son was diagnosed with ACC after my MRI last week. anyone with experience have any advice at all?

    #6992899

    TurtleMom
    Participant

    Hi deedee26, I know this is scary news, but try to keep your head up. A shunt is not the end of the world. I kiss my daughters’ shunt every day because if it weren’t for it, she wouldn’t be alive. Each child is different and you have to embrace those differences. Special children have special parents. I know that when you get pregnant you only want ‘a healthy baby.’ But, honestly, I wouldn’t change a thing. (Maybe the pain my daughter has endured) It has made me who I am and made her who she is. She is the most loving, caring, sweetest, joyful 2 year old you would ever want to be around. And, she has Hydrocephalus. By this point in my pregnancy, she was already born because her head was the size of a toddler. Even though your LO may need a shunt, the case is not very severe. There is a blockage, but the obstruction did not cause the brain damage that occured with my daughter. Parker is still missing 1/3 of her brain because of atrophy that occured because of all of her brain damage in utero. If it is possible, I love her even more.

    #6993155

    crystalal22
    Member

    could you tell me plz what the facebook page name is.. i just read turtlemoms story its amazing and i feel very hopeful!!!

    #6993411

    Katieandiggy
    Member

    Laila- heads are notoriously hard to measure and each person measures it slightly differently, in a slight different spot. How is her weight? I ask because if kids aren’t putting on weight properly, not getting enough nutrients, their head can eventually STOL growing too. I remember you saying on a previous post that she didn’t put weight on great?
    I think the MRI will give you more answers!
    P.s I’ve read lots of stories with kids not walking until 2 yrs especially if they are low tone. I’m sure she will walk in her own time.
    Keep us updated.

    #6993667

    Minimommy
    Member

    @TurtleMom – Just had a look at your site and I was speechless. You are one strong woman, in fact both of you along with your princess are strong people! Your journey is testing and remarkable love! I have no business to say this but I feel like saying I’m proud of you for having made that journey – a hope and inspiration for all of us out here. Your daughter is beautiful 🙂 God bless!! A big hug to you and your hubby 🙂

    @agilbert – Hang in there Hun, stay positive( I know it’s difficult) but still, they say mind and thoughts reflect and affect physical body. Pray and think about the best, you’ll be in my prayers too.

    #6993923

    davjoyce4
    Member

    Tim and TurtleMom- I cannot thank you both enough for taking the time to respond. This blog has been so helpful and has really helped me get through these past 20 weeks. I will be sure to keep you updated. Tim, you are exactly right about the head size. Our Neurologist said the same thing. She felt the head size was the most reassuring thing. Thank you again!

    #6994179

    TurtleMom
    Participant

    sunnyoutlook, you are correct on the measurements for lateral ventricles. If they are at or around 10mm, there is a wonderful prognosis. But, mummy4812 described the 4th vent as enlarged. That is a completely different story.

    #6991620

    TurtleMom
    Participant

    cpamom, I am sorry about the news. You know that sometimes the tests aren’t accurate and everything could be fine. I read a little about c8 and it does seem quite rare. I know it isn’t quite the same, but we have a family friend who has a 3 year old with Turner Syndrome. She wasn’t supposed to survive to term. She is the most joyful, talkative little girl you would ever meet. So, even if the outlook is blead from the docs, you never know. I’m thinking of you. I know this must be such a hard time.

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