Hydrocephalus

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  • #10428953
    Profile photo of i-am-pregnant
    i-am-pregnant
    Keymaster

    Hydrocephalus

    #10428954
    Profile photo of TurtleMom
    TurtleMom
    Participant

    Just checking to see if there was anyone out there. I am 19 weeks and my baby was just diagnosed w/hydrocephalus. Obviously, I’m freaked out. It would be nice to chat with others going thru (or have gone thru) a similar situation.

    #10428955
    Profile photo of lin
    lin
    Member

    turltlemom- There is actually several people on this site that are dealing with enlarged brain ventricles and hydrochepalus that can offer some support. Look under the ventriculomegaly forum in the pregnancy section. You will find a lot of mom’s experiencing the same thing!

    #10428956
    Profile photo of gogators
    gogators
    Member

    hi im new to the site. a few weeks ago i had my first ultrasound at 18 weeks. everything looked good and its a boy, but one of his tubes from his kidney to bladder was dialated. my doc recommened the quad test which we did it was negative for congentital anomolies. doc still referred us to specialists. there are 2 in the practice. i saw one last friday who saw that the right kidney was now dialated and the left kidney was in the pelvic area and did not looked formed. but good news was that he was peeing. only other thing he saw was that his femurs were measuring small. monday went to have the amnio done. saw the other specialist. he measured the ventricles to be a little over 10mm and called them dialated. he said also the nucal fold was too big. and he saw no kidney on the left at all. i am still waiting for the amnio. but i am so confused how different people see such different things on US. any advice would be good. been reading lots of blogs about dialated ventricles. thanks for all your comments i have already read, it has made me feel a little better. by the way i have a healthy 1 1/2 year old and am only 29. but these doctors have made me a nervous wreck. help

    #10428957
    Profile photo of TurtleMom
    TurtleMom
    Participant

    Hi Gogators, there are losts of posts on the ventriculomegaly page of this site. Technically at 10mm that is the name of the condition and not hydrocephlaus (which is a good thing). Kidney problems are quite common with this condition. Check out the other page (http://www.i-am-pregnant.com/encyclopedia/Babies/Ventriculomegaly&page=1#msg) and you will find lots of stories. And, it is extremely common to have differing opinions. Is your doctor a Perinatalogist?

    #10428958
    Profile photo of MummyBigz
    MummyBigz
    Member

    Hi ya all,
    My baby was born 9 weeks ago with lumbersacral mylomeningecele (spina bifida) He was operated on at 4 days to close his spinal cord, And at 7 weeks he was then diagnosed with Hydrocephalus! He had yet another operation which was for his hydro which was a endoscopic third ventricalostomy, I have been worried sick about him, He seems so small to be having all this done, but hes a little fighter and is recovering fabulous!! These little sweet babies are so much stronger than what you anticipate. If any one would like any info on what we have been through so far i dont mind sharing, as i was mortified when given the news about my babies birth defect as it wasnt detected on any of the scans i had, And i felt so alone and had so many questions to ask but found it hard to find people with the same condition as my little angel!
    Emma xxx

    #10428959
    Profile photo of sw
    sw
    Member

    My daughter Maddie was found to have Hydrocephalus 1 week before she was born. It turns out to be that she has an isolated Agenesis Corpus Collosum. The day after she was born she had a shunt placed in her head and it is working well with no infections. She is now 3 months old and developing with mild delays (eye and head control). She smiles, coos and she is able to grasp things and put her hands together, which shows a good sign.

    It was scary at first finding it all out but I realized I can only take one day at a time and trying to love her the way she is. I always focuss on what she can do instead of what she can’t. That is what helps me the best.

    If anyone wants to chat let me know.

    Susan

    #10428960
    Profile photo of montrealmama
    montrealmama
    Member

    Hi, I am new to this site and this nightmare. I am 40 years old and the mother of 5 year old healthy twin boys. I went for my 20 wk routine ultrasound 4 days ago. They told me my baby has bilateral ventriculomegaly of 16 mm on both L and R sides. Her cortex is still greater than 1 cm – so no hydrocephaly yet. Since then I’ve met with a genetics counselor and had bloods taken for toxo and CVR and had an amnio (should get the FISH results in a day or two.) We’ll meet with a neurosurgeon this coming week and hopefully have an MRI. Also scheduled for a fetal echocardiogram in 2 days. All that being said, I only have 3 and 1/2 weeks to collect all my results and make a decision to continue or terminate. In Quebec law, they will not terminate past 24 weeks. None of the doctors or geneticist have ever said this can resolve on it’s own. If it is isolated VM, and I don’t have toxo, CVR, or a chromosomal defect, then why aren’t any of the professionals telling me to hope for spontaneous resolution? How quickly can the ventricle measurements change?

    #10428961
    Profile photo of Aleksandra
    Aleksandra
    Participant

    Okay…so I went to the second ultra sound my dr requested at the hospital. The tech…not very helpful, acutally made me worry more by not saying anything. The dr said that the first 33 weeks US showed water on the brain, a little more than they would like. So she rquested the hospital staff to do another in depth scan and found that the first measurements were off and the amount of fluid is not as much as originally thought. I asked her if it was hydrocephalus she said she couldn’t say for sure. But that she would recommend that the baby has an ultrasound when born to see more. Completely confusing me is that she said, she questions if the first ultrasound was done at the hostpital whether or not the tech would make note of this small amount of water. Then she also said that it could go away on its own. So no real definition of what this is or what is not. All my other scans perfectly normal. Anybody else have a scare like this? Might be something but turns out not to be?

    #10428962
    Profile photo of TurtleMom
    TurtleMom
    Participant

    Aleksandra, it sounds like your baby has Ventriculomegaly instead of Hydro at this point. There is a page on this board – http://www.i-am-pregnant.com/encyclopedia/Babies/Ventriculomegaly&page=1#msg that is very helpful. It is hard to get an accurate scan the further in gestation you are. Did they mention ventricle measurements? If the ventricles are large without them increasing, it is just VM. Let me know if you need anything. My daughter has Hydro among other brain anomolies.

    #10428963
    Profile photo of dessa
    dessa
    Member

    aleksandra- I was born myself with Water on the brain-hydrocephilis. My mom developed something while i was inside her and they think that it was from sand or kitty liter. Now that I am 10 weeks pegnant i wont get even close to kitty litter or sand. It may be from what I have been through but I dont want mhy baby to have to go through it and from what all the sytemtoms it say u could have with water on the brain I dont have many of them…I am good and only had to have the shunt changed out 1 time in mu life and I am 22 years old and they told my mom I could have to have it changed every 6 months! I mirical is what i call it. I also worried if I could pass it on the my baby genetically and its only if develope the same thing my mom did I was realieved! Hope this helps a little!

    #10428964
    Profile photo of i-am-pregnant
    i-am-pregnant
    Keymaster

    hey all. i didnt even realize there was a forum about hydrocephalus. when i as 19 weeks pregnant my so was diagnosed with hydrocephalus. i recieved a amniocyntesis and was told that it as not chromosmal…they kept urging me to think about terinating. i completely refused. now i am 36 weeks and my sons condition has gotten worse. his ventricles are dialated to 12 cm. his right ventricle is at 75 mm and his left is at 38mm. i have to have a csection at 38 weeks and my son robert has to have brain surgery the day aftr he is born. i am just hoping and praying for the best if anyone has gone through this or is currently please contact me. i would love to have someone to talk to

    #10428965
    Profile photo of Siluvssam
    Siluvssam
    Member

    When I was 19 years old, I was pregnant with my second child. During the last month of pregnancy I was given a ultrasound and at the time was told my daughter would be born with Holoprosencephaly. I was given a 75 % chance it was that or a 25% chance it was Hydrocephalus. My doctor induced me at 29 weeks and told my husband (who was deployed overseas) to prepare for a funeral. I was never directly told about this til after my daughter was out of her VP shunt placement surgery. When Ariannah was born, it was a moment of joy and still pain. While in the NICU the doctor did all the test. X-ray, CT scan, MRI, And sent us home with the diagonsis of Holoprosencephaly with a 2 weeks life length. In shock and awe we did all we could to help her be comortable. After a month of being home and no changes we took her to a children’s hospital. There at that hospital they informed us that she didn’t have Holoprosencephaly bur Hyrocephalus. Her Shunt was placed and thrived and grew. At 11 months she developed seizures. She is now 5 years old And She is delayed but here with us! That is all that I care about. We have been through hell and back with her condition. I am glad that I had her though. She had thaught me how to be more aware of everything with all my family.

    #10428966
    Profile photo of i-am-pregnant
    i-am-pregnant
    Keymaster

    hi all!! well baby robert was born with severe hydrocephalus, right to left ventriculomegaly and a underdeveloped cerebellum. he had his original shunt surgery on the day he was born which was april 22nd. on the 30th his incision was leakink csf fluid so they brought him into the er. they decided to put a programmable shunt since his original one was draining too much too fast. his head circumference was 52.5 cm and now is 46.5 cm. he got to come home on friday just in time for mothers day and daddys birthday. he is having trouble nippling his total feeds but is starting to get the hang of it. other than that he is doing wonderfully and i couldnt ask for a better or cuter lil baby

    #10428967
    Profile photo of mom2hunter
    mom2hunter
    Member

    Hello everyone. I was hoping someone would be able to walk me thru this. On saturday (4 days ago) I found out my during my 20 week level 2 ultrasound that my baby has hydrocephalus and ventriculomegaly. The vents are measuring over 20 mm already. HC is measuring at 20.29 cm. I met with a neonatologist and was told that my baby has no chance to live a normal life as this is the crucial weeks (16-20) for a brain to develope. Has anyone been told the same? If so, how was your child born? I was told my baby would be severely brain damaged as the ventricles are so swollen with fluid that there’s no room for the brain to grow. My FSH was normal, same with BUNS. I was told that this was an isolated case. Please help. Thank you.

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