Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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mylsdeniz - 26 days ago.
sjsr, I also live in uk and I had to terminate my pregnancy at week 31. I suggest you contact with the http://www.shinecharity.org.uk . they will give you lots of information, also you can meet with the parents who have same experiences. someone will visit you at home and support you as well. I contacted with them and one week later they gave me a call to visit me at home to give information. but one day before they called me, i terminated my pregancy. In UK doctors gave the worst scenoria. all the forums and parents here , who live in USA is more relaxed than the mums in UK. I think you should keep your pregnancy. The health system in uk is free, may be for that reason they give the terminating option every time you visit your doctor. from the first day i learned what was wrong with my baby , I was given this f**ing option which I did not accept . but every time they diognised different abnormalities with my baby , I thought that the best thing that I can do for my baby wa terminating the pregnancy which makes me upset everyday. if there is no other abnormalities pls keep your pregnany and contact with the asbah group. my heart is with you and with your baby.I dont want you leave the hospital with a memory box. Dont let them and be strong for your little baby.

LDMusgrave - 26 days ago.
Yes, my post was meant towards Crystal and Blessedblessy. I am sorry if my post misled anyone into thinking you should join the group without a diagnosis of hydrocephalus.

turtlemom - 26 days ago.
Hold your horses, peeps! I don't want to be a party popper, but but it would be best, if we kept the FB group to those with vent measurements of 15+ as it is a Hydro group, not a VM group. This is a VM group. FB is for those of us dealing with Hydrocephalus. 97% of those of you reading this post will never have to deal with this condition, thankfully. So, be glad you don't need an invite to our party.

LDMusgrave - 26 days ago.
I would also encourage you to join our very tight knit group of parents over on Facebook. You will be warmly welcomed!! You can find me on Facebook if you search Lindsey Dewar Musgrave. Please tell me you want to friend me because you want to join the group so that way I will know who you are!! We can't tell you that your baby will not have delays or developmental issues from brain damage-- because it is a very real possibility. BUT... what we CAN tell you is that there is also a very real possibility that your child will AMAZE you EVERY. SINGLE. DAY. I know this from experience... my daughter's ventricles were 70 mm and 32 mm at birth. She did receive a shunt at one day old. She is now 13 months old and has no delay.

crystalal22 - 26 days ago.
does anyone know if an irregular heart beat of the baby has any bad implications when she has ventriculomegaly??

turtlemom - 26 days ago.
Hi all! Just have a minute. To join the FB group, it is private so you have to be my friend first - Amy Whisler Hendrix - Oklahoma City. Please send me a message letting me know you need to be added and you know me from the VM board. Katieanddiggy is completely correct that things may not be as bad as they seem. There are a lot of variables. Most doctors do not know a lot about this condition. My daughter is a bit of a miracle. Most with brain damage like hers do have disabilities. And, she does have a shunt that allows her to live. But, 97% of the people reading this will never have to worry about that. Click on my name for our complete journey. Good luck to each of you!

katieandiggy@tiscali.co.uk - 26 days ago.
Crystal- I'm not too sure as I'm not on Fb but LD Musgrave and Turtlemom will be able to advise you.

crystalal22 - 26 days ago.
could you tell me plz what the facebook page name is.. i just read turtlemoms story its amazing and i feel very hopeful!!!

katieandiggy@tiscali.co.uk - 26 days ago.
Sjsr and crystal- if you find a post on here by Turtlemom and click on her name she has a blog. Here daughter had a severe case and I'm sure you will get great comfort from her story. She will give you great advice on what to expect.

crystalal22 - 26 days ago.
diagnosed last week! she is 32 weeks in utero the 3rd ventricle is saying .89mm the fluid in the left ventricle is 2.53 centimeters the fluid in the right is 1.56

sjsr - 26 days ago.
hi katie ,my baby has two dilated ventricles measuring 20mm and 30mm, I don't know what to do I was given the option to terminate but we have decided to go ahead.

katieandiggy@tiscali.co.uk - 26 days ago.
Crystal- again I'm sorry to hear your story. As I said below there are several women on the site that have had great outcomes from severe cases. They have a group on Facebook too. Depending on how big the ventricles measure your baby will probably have a shunt put in at some point. There are many ladies here with children with shunts and they are doing 100% fine. Can I ask when the ventriculomegaly was diagnosed and how big the ventricles are?

crystalal22 - 26 days ago.
so these past few days have been extremely difficult my baby has been diagnosed with aqueductal stenosis /severe ventriculomegaly im so scared and freaking out i have no idea what to do and if she's going to be ok ill be scheduled for a c section at 37 weeks which is in about 4 weeeks.. i am a total wreck and then today i had a non stress test and now her heart beat is irregular today but was fine 2 days ago could someone PPPLLLEEAASSEE help me and talk to me!

katieandiggy@tiscali.co.uk - 26 days ago.
Sjsr- I'm sorry you have had that news. There are many ladies on this site with great outcomes of severe cases. Ld musgrave and turtlemom both had children with servers cases as she stated below and their children are doing very very well. Did they give you any indication of the ventricle measurements?

sjsr - 26 days ago.
hi everybody i am new to this site and i live in uk, i am 26 weeks pregnant and my baby has severe ventriculomegaly, i saw the geneticists and she said that its very unlikely that my baby will survive and if he does it will be with severe disability. I dont know what to do where to look for help, will some body tell me what will the outcome of this on my baby.

LDMusgrave - 27 days ago.
Also, your baby's case may not even be severe enough at this point to require a shunt immediately. 23 mm isn't quite as large as most kids with hydrocephalus. For example, my own daughter's ventricles were 70 mm and 32 mm at birth. There is still a chance she may not need a shunt! I'll pray for that!

LDMusgrave - 27 days ago.
Blessedblessy, where do you live? If you live in the U.S. your baby will get the shunt and you'll be billed later. Do you have insurance? If you can't have a shunt placed immediately (within the first couple days of life) then the ventricles will continue to increase in size, and the brain matter will continue to decrease in size. Once a shunt is placed, it gives the brain matter a chance to expand back into the places it should be, instead of the swollen ventricles taking that space. And of course with the brain matter being pressed against by the ventricles, there is always a risk for brain damage to be done. If you'd like to connect with me over Facebook, we have a wonderful group of parents of shunted kiddos who would be more than happy to support you and talk to you about the process.

amy73 - 27 days ago.
Hi Carine. Thank you so much for leaving your really encouraging message. I'm so pleased that everything has worked out so well for you. It goes to show that things can and do resolve themselves sometimes. I am just really hoping and praying that things will turn out OK for us. It is all the waiting that is the hardest thing to cope with. We still have to wait another 2 weeks before the next scan and only then will it be 29months, with another 11 weeks of anxiety to go!

blessedBlessy - 27 days ago.
Hi everyone! I'm scheduled for CS this coming 25th. My baby's vent is 23mm... she'll have ct scan right after birth.. depending on the result, they're gonna give my baby a SHUNT.. which is really VERY EXPENSIVE.. do you have any idea what would happen to my baby if ever we can't do the shunt immediately?

katieandiggy@tiscali.co.uk - 27 days ago.
P.s my sons measurent in uteruo was 10-11mm but on his head scan after birth it was shown to be 12.5 mm i think the in uteruo u/s measurements are not 100% reliable as positioning of baby and movement can throw them off and 1mm is such a tiny measurement it only has to be out by a bit to get an inaccurate figure.

katieandiggy@tiscali.co.uk - 27 days ago.
Carin- firstly I'm so pleased the ventricle reduced. Can I ask how long after your daughter was born she had her head scan? My son was also diagnosed with isolated unilateral VM at 33 weeks. My 28 week scan was normal. He was born on Xmas day and had a ultrasound at 8 hours old and the ventricle was still 12.5mm, the other completely normal.

carineaubry@yahoo.com - 27 days ago.
Hello everyone, I have been checking this forum since my daughter's diagnosis in utero of stable isolated mild unilateral ventriculomeglay at 28 weeks during a routine growth ultrasound. The ultrasound found the ventricles to be asymmetrical with one measuring about 9mm and the other around 4mm. (I know these numbers are still within normal range but the asymmetry was pretty pronounced). This led to an MRI scan which found different numbers of 12.9mm and 8mm. We were very confused about the difference in measurements but continued to see our OB for ultrasounds every 2 weeks to monitor the situation. From the first US to the last, the numbers never changed but the ventricles remained asymmetrical with one slightly dilated if the MRI measurement of 12,9mm was to be believed instead of the 9mm on US. The rest of my pregnancy was very nervewracking and stressful and I prayed every day that she would be ok. I cried and cried for the first few days, worried sick about my baby. I took an Omega 3 prenatal supplement. My daughter was born last week and we had to take her in for an ultrasound of her head. I am overjoyed to announce that the scan showed the ventricles being symmetrical in size and well within normal range. There is no issue and the brain is completely normal and healthy. I wanted to share because miracles do happen and I know that's not the way every story ends but it feels good to see once in a while and it can give you hope. I hope and pray for the same outcome for all of you. I know very well that from the first hint of an issue it is an emotional roller coaster and it makes it hard to enjoy the pregnancy and focus on the positive. Hang in there and believe that your little sweethearts will be ok. Sending positive energy your way.

katieandiggy@tiscali.co.uk - 32 days ago.
Laila your right. Most of the time I look at him and forget he has anything wrong with him, just every now and then I become frantic and start googling things again. He's doing really well so far, he put on 11oz the first week and 12oz the second week, he's now 10lb 4oz little fatty. His head has grown 1.7 cm in 20 days which is completely normal. He has his rescan in the next 10 days I'm just so nervous.

laila10 - 32 days ago.
Katie, when I discussed with the neurologist and pediatrians about causes of VM, they told me that TORCH tests are not enough to assure that the baby didnt caught viral infection, because there are other virus that can´t be detected by tests, who knows! Katie,just enjoy your new born baby, I remember when my baby was born I was very upset killing my self to find the reasons for her VM, what I could have done wrong during pregnancy, I wish I could have spent those moments giving my baby more care and more love. just think positive, it could be nothing and your baby is totally healthy as many others in this site. I wish u and all moms here the best.

katieandiggy@tiscali.co.uk - 32 days ago.
Kjh- great news! It's a relief when you get answers. My pedi is very upbeat, I'm still very cautious. He has not recommended an MRI as of yet, im not sure if I should perhaps suggest it... My question is does anybody know how reliable the TORCH tests are? Mine came back clear but I have read several sites saying that some of the results are unreliable, has anyone ever heard that? I'm concerned because toxoplasmosis is carried by sheep and I took my toddler to the farm lots in the summer while I was pregnant and I'm worried I caught something and it hasn't shown up.