Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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turtlemom - 280 days ago.
Ventriculomegaly just means enlarged ventricles. Hydrocephalus occurs when there is some sort of blockage or overproduction of fluid. Some physicians use the terms interchangeably but technically there is a difference. If a shunt is required, the condition would be considered Hydro because there is some sort of blockage and the shunt is required to allow the fluid to flow. You can have ventriculomegaly (just large vents) with no blockage = no shunt. But when you see an increase in vent measurements, that is when you know it is hydro. If the vents are large but stable, then it is ventriculomegaly..

deedee26 - 280 days ago.
Thanks ldmusgrave!! U added me on ur Facebook remember!! Lol! I have a question. The doctor never said it was hydrocephalus she just said she is going to need a shunt! Does having a shunt stops been called ventriculomegaly and becomes hydro or can ventriculomegaly also have shunts am a bit confused! But I don't want to read it on the Internet cos the more I read it the more freak out I get an am trying to be calm an positive with her outcome but also preparing myself for what it's going to happen but I don't want her to feel that I am upset because of it if u know wat I mean. I know we going to have to go through many things if the shunt does happen but I just want her to feel love an happy an secure. I don't know if I am making myself explain properly sorry for the big muddle of words. Anyways am just trying to figure it out when does ventriculomegaly becomes hydrocephalus?

LDMusgrave - 281 days ago.
Hi Deedee, are you on Facebook? We have an awesome group of moms who have babies with hydrocephalus (most with shunts.) I am Lindsey Dewar Musgrave on there. Turtlemom was the first mom I met, her and her daughter are sooo amazing! My LO is 5 months old and her ventricles measured 70 mm and 32 mm. VERY LARGE! She's doing really well so far!

deedee26 - 281 days ago.
Thanks turtlemum! Really appreciate ur words! I think it was the shock cos u go there with ur hopes up that everything is gonna be ok just to find out it's not, it doesn't matter anymore whether she needs a shunt or not or whether she is going to have problems or not I just want to be able to hold her an love her am be a good mum to her an her big brother I have accepted that my baby is not going to be the healthy baby that we wanted but I just feel blessed that am going to have her here with us!an right now that's all that matters!! The only thing am gonna focus on know is to try and have a normal birth and keep her there until is time to come out an not be early like her big brother!!!

turtlemom - 282 days ago.
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.

deedee26 - 282 days ago.
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

mommy2E - 288 days ago.
Hi Canadian Mom, Not sure where you are in Canada, but we found some info on Canadian collection. There is Cells for life laboratory located at Toronto General hospital, but the brochure also has Markham, Montreal and Calgary listed as offices. their website is www.cellsforlife.com. There is also a program called Insception based out of Calgary, Missisauga, Ottawa and Toronto. Their webiste is www.insception.com. I haven't really researched them at all, just recently went to a prenatal fair and picked up the information. HTH

turtlemom - 288 days ago.
But, you are running out of time for the cord blood kits from Duke probably. They are really hard to get in touch with because they get so many requests. If all else fails, you could just have your sil bank commercially and pay ($2k) to expedite the process. We used CBR and were happy with them. It did stink to pay 2 grand for something we could have gotten for free but for peace of mind it was worth it. Technically those twins could come anytime now. The collection of cord blood is a chance you can never get back. We believe it changed our lives forever.

turtlemom - 288 days ago.
Www.fetalhydrocephalus.com There is a link on the left. You will contact June Allison at Duke University on behalf of Dr. Kurtzberg. In their program you they will send you a kit and you can deliver anywhere but the re-infusion has to be done at Duke. There is something similar in Arizona. If you go to the Cord Blood Registry page On FB, they just posted an article about the Arizona trials. But, it sounded like this was a study (meaning you may possibly get placebo -ask about this) and it sounded like you had to deliver in Tuscon.

Canadianmom74 - 289 days ago.
Thank you, that was my exact next question...where to get info about chord blood. They live in Canada, but would go to the US if necessary. Do you have any sites you could direct me to about chord blood?

cjengo - 289 days ago.
PS - Turtlemom is right I 100% support storing cord blood. We so WISH we would have stored Jude's. The stem cells may have helped some. Check with Duke University. They were offering a free program at one time to those babies that might have had an in utero stroke. They stored the cord, etc.

cjengo - 289 days ago.
Yes Jude did have a stroke. Jude has fluid on the brain but it's not hydro. Rather the fluid is filling in parts of the brain that didn't form due to the stroke.

turtlemom - 290 days ago.
Cjengo's son had a stroke in utero. I don't think Jude ever developed Hydro, but it sounds like your LO is. The Hydrocephalus Association is a great resource- www.hydroassoc.org. Also, I can't encourage you enough to store cord blood. There are very miraculous studies going on with traumatic brain injuries and I know cjengo would tell you to do so for stroke as well!!! We don't know the cause of my daughters Hydro. You may want to click on my name to read our story as well. And, the babycenter board I referenced below has several stroke babies there as well. Blessings to you and your baby!!!

Canadianmom74 - 291 days ago.
LDMUSGRAVE - thank you for that. That is exactly what I needed to hear. My SIL also came across this site and 'caught' me. She knew right away it was me posting LOL. I just wanted you all to know that she has learned a lot here and is grateful for your posts. My neice was fine at 29 weeks. At 31 her vents were 17 and 18. At 32 weeks, they were 35 and 40. The dr said she has had a stroke in-utero. Are there any sites that you could direct me to that could give us some good information on this?

LDMusgrave - 292 days ago.
Hi everyone, my daughter is almost 5 months old now. At birth her vents were somewhere around 70 mm on the left and 32 mm on the right. She is currently developmentally on track so far. :)

turtlemom - 294 days ago.
I'm not sure. It is the Hydrocephalus Community on Babycenter.com. If you do a query, you should be able to come up with it.

mommy2maris - 294 days ago.
Just got a call from the doc she said the 3rd vent was measuring 9mm x 3 mm and the lateral 2 were both at 8.5 mm. How do I get to the hydro board? I don't see that one listed.

cjengo - 294 days ago.
mommy2maris - I was always told it is very difficult to get accurate readings via sonogram. I would think that's double so with the 3rd since it's smaller. If they aren't suggesting an in utero MRI there may be nothing to worry about.

turtlemom - 294 days ago.
And, if this makes you feel better, it must be mild. If things were moderate or severe you would have an appointment with a Perinatalogist (high risk OB).

turtlemom - 294 days ago.
There is a hydro board on babycenter that may be better for you to pose your question. Most of the cases here resolve and I don't recall anyone else with 3rd vent dilation around here. You may have more luck with answers over there.

mommy2maris - 294 days ago.
Turtlemom, that's what the doc told us on Monday. I guess I could have misheard her...Me and my husband were really caught off guard with this news. I have a call in to her now, so hopefully she'll call me back so I can get the measurements. I'll post again when I hear something. Thanks for answering me. I just feel like I have so little information right now especially without the measurements.

turtlemom - 295 days ago.
Sorry, mommy2maris, I tend to only reply to the severe cases as the mild Ones normally resolve by the third trimester. However, what strikes me as odd is that fluid is noted In the third vent. I believe that to be uncommon. Typically, with hydro, acquedutal stenosis is the most common form (blockage in the 3rd vent), but it normally presents where the two lateral vents dilate, then later the third gets larger. The third is much smaller than the two laterals so wouldn't even know what a normal third should measure. I know when my daughters measured 10mm, that was huge for a 3rd, but would be barely mild (really almost normal) for a lateral. Are you sure about it being the third that is dilated?

mommy2maris - 295 days ago.
~Repost~ Any advice?? I'm 19 weeks pregnant and yesterday was my second US. The doctor told us that our daughter's 3rd ventricle was holding more fluid than normal. She didn't actually use the word ventricularmegaly, but this was what she was describing. No other noted descrepancies, besides our baby is a little small and instead of a 3 vessel cord, she has a 2 vessel cord. She told me and my husband that it wasn't something to be overly concerned with, but that it wasn't something to be overlooked either. She didn't give me the readings so I have no idea if it's mild, moderate or severe...she just scheduled me for another US in 3 weeks. I can't help but to be a little concerned, but also know that ultimately God is in control and there is nothing I can do. Is there anything I need to be asking at the next US?

cjengo - 295 days ago.
turtlemom - I agree with you and you know I feel the same way. I guess because I have seen and heard about the people that cannot handle it I sometimes worry about the replies that are left. I am pro choice too, but some people just aren't. Who knows......we may be replying to one of those that just can't handle it. Anyway, your an amazing mom and Parker is so precious. We are glad to have you guys as friends.

turtlemom - 295 days ago.
I know that we never blinked an eye about keeping our baby when our Peri told us there was a 50% chance of 'profound disabilities.' We were sad that she wasn't going to be able to experience the life we had imagined for her. But, we never once thought about terminating her. I am pro choice. I believe not everyone is able to handle this situation. But, because we are it is hard to imagine someone would end the life of a baby at 29 weeks. Parker was born at 32 weeks. Her case was more severe than 95% of the cases presented here. So, it is hard for me to hear a doctor recommend termination when there is a good chance of a healthy baby. Plus, even if the baby isn't healthy, I would still take care of it. I know babies just like Parker are left. In fact, our Nurse Case Manager at the hospital recently told me she wished I could counsel this couple who were leaving a baby just like Parker at the hospital, because they were grossed out by the size of her head. I don't get it. It makes me sick. But, I guess some people were not meant to have unconditional love. Pity.