Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

Comments 426 to 449 of about 1739.
Previous 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 Next

cjengo - 296 days ago.
samismum ~ Jude's went down. They were at 9 and 10 when he was born. It's really just a 'wait and see' situation. I always hated that reply but it's true. Hang in there!!! You made a decision to march forward like I did so just trust your heart.

samismum - 296 days ago.
I've got five weeks left before LO arrives. No scans or MRI till after the birth now. I thought I was going to be be very happy with this but now I can't help worrying that the vents might be getting bigger. We were told that they had stablised in the last scan. I just hope they are getting smaller or at the very least staying the same. I know I said I'd enjoy the rest of my pregnancy but as you all know, there are ups and downs in emotion. It's like I had gotten used to worrying over the last 3.5 months, silly hey? Once stablised have vents been known to grow again? Or do they get smaller? What is more likely? I wish I could snap out of this stupidness.

partyof5now (Sonya) - 296 days ago.
cjengo - very true, we all want our babies to be healthy & hold onto hope but that isnt always the outcome. Which I can only imagine is just devistating. I must admit I am pro choice which I said many many months ago when I was going thru my sons diagnosis, and I know I mad many mad on here that read me say that but my opinion is unless you have walked a mile in that persons shoes then you cant judge them. So yes when we 1st were given my sons diagnosis & told that his quality of life would not be much at all, my partner & I did seriously consider terminating, even as late as 29 wks when we found out. Everyone wants a perfect healthy child & I can live with the hurdles that may be ahead for my son if possible delays pop up later but I honestly have to admit as I did months ago when I was going thru this I just do not feel that I am strong enough to take care of a severley medically dependant child, I always considered myself to be a strong person that can overcome anything but when that possible situation hit us while I was pregnant with my son I knew I just wasnt strong like that. Everyone kept telling me 'God will only give you what you can handle' but I just dont think that is necessarily true 100% of the time. Now I would never leave my child to be alone either if that did present itself when my son was born as you said some people have done, that just makes my heart drop when I read that but I do know it takes a very strong person to face that & I have to give my hat off to you that you are that strong & have such love for your son. And even comparing this situation inutero to an older child having an accident & becoming disabled to me is just not comparable...totally different scenerio. During our ordeal my partners & my main concern was my sons quality of life after birth & the impact it would have on my exisiting family if my son was born as severe as his docs said he would...it was a tough choice & we spent many sleepless nights crying about it & debating...even at one point agreed we would set up an appointment & I found myself emotionally detaching myself from my pregnancy & my unborn child...I know it is sad to say but I admit it, it was just too much for me. It was just hard to enjoy my pregnancy afterwards. But in the end for some reason I just did not feel my son would be as severe as they kept telling me so we continued & thankfully everything turned out fine. Which is also the reason why I had a tubal after my sons birth, I just felt I couldnt go thru that again if it happened again. I know all stories dont end up as fortunate as mine....my heart goes out to all the families that go thru this, all the families that terminate & live with the grief of loss & to all the families that go thru this & have a disabled child after birth...

cjengo - 296 days ago.
two-on-board - So right and thanks for the follow up message to mine I so appreciate that. As much as we all want to voice our religious beliefs not everyone believes the same. We don't know if the person we are giving advice to could handle the situation with a special needs child or not. So we just have to help people by educating them to research the positive and the negative. To make the best decisions for your family and your baby.

two-on-board - 296 days ago.
Hi Cjengo, you are very right, I have read your blog and it is honest and straight to the point. I have been through the worry and the anxiety and to a point this does not end despite my son being 'one of the lucky ones'. However, I have five other children too. Of course we all want our children to have trouble free and straight forward lives, but accidents and illnesses can happen at any point of any of our lives and the consequences of these can devastate and change lives. In the midst of all my worry when I was pregnant I used to think how I might feel if this happened to me, my husband or any of my other children. Would I reject them or admit defeat in their care? This has nothing to do with God or a trip to Holland (there will be those of you who are aware of this poem) or a personal journey already mapped, it is about dealing with life and what is thrown at us at the time. All our children are special, diagnosis or not, they all deserve the best in life because they are children and should be given the same opportunities. Our parents are frustratingly right when they say in their day none of these tests and scans were available to worry or concern us, they just got on with it and hoped for the best. Having the gift of hindsight, that is what I would have wished for for myself. Eventually we meet our babies and we deal with what we are faced with and we would not have it any other way because they are ours and we love them no matter what, however hard or easy things are. All the best to you all XXX

cjengo - 296 days ago.
I was reading over all the messages on this board. It brought me back to when I was pregnant with Jude and I was grasping to hold on the hope. I wanted to share with you some brutal honesty. I hope no one takes offense to this, but I do believe it needs to be said. I am hearing a lot about how 'every child is a miracle', 'every child is a gift from God', ' most cases are isolated' etc. Let me stress I agree with this, BUT not everyone does. I don't want to see any child terminated, but I also want people to be realistic. I hope for nothing more than your children to be normal, but I think it's important for you to ask yourself......what if they aren't. I think my family was ignorant........we had no idea what taking care of a medically dependent child meant. It's more than I ever could have imagined......and I would do it all over again, but some people wouldn't. My cousin has flat out admitted to me she would have already put the child in a home. I was mortified when she said this......but my OB helped me realize not everyone has the capabilities of being able to handle a severly dependent child. So I am spreading some advocacy here. I have a friend that donates her time to a local children's hospital to go sit with the children that are disabled that have been abandoned and are now a ward of the court. My OB said she has had several parents walk away from newborns that were born with issues. They simply told their families something happened during delivery and they lost the child (awful huh? but TRUE) She said typically type A personalilities have a very difficult time with this life. Again, I want NOTHING more than everyone here has a positive outcome. I don't want to worry anyone or make anyone stress further, but I do think it's necessary to make sure you are prepared if the outcome isn't what you expect it to be. It's important to know your plan B. It's important to talk with your provider about the positive outcome and the negative outcome. I found out after Jude was diagnosed that 1 in 4000 babies suffers a stroke in utero that can present with ventriculomegaly which is greater than the risk for spina bifida. I honestly believe in my heart that every child is given to their parents for a reason. Jude has done more good for this world than I ever could. So I am hear to offer the other side. I speak up and say 'HEY my situation didn't turn our positive, but our life did'. Also, remember to be good to yourself in your pregnancy. I stressed all the way through mine because of the initial sonogram. I should have just sat back and let nature take it's course and loved my baby.

partyof5now (Sonya) - 296 days ago.
pothi - glad to hear the vent measurements are down to a normal range...wishing you & your little one all the best

pothi - 297 days ago.
Today ultrasound gave us some relief, now the size is close to10mm. As someone here suggested, I am taking DHA supplements along with prenatal. We are thinking DHA helped us. Thanks a bunch to that someone.

partyof5now (Sonya) - 297 days ago.
Hi mommies, my son was watching the Disney Junior channel this morning while I was getting ready for work & I heard this poem being recited that almost brought me to tears...in all that we have gone thru for us who already have our little ones here, the newly diagnosed & all the future to be diagnosed out there, I think you will all appreciatie this poem as much as I did, it made me run over & hug my son who is such a miracle to me..then I had to redo my makeup...lol. The Poem is called 'Mother's Song: My heart is like a fountain true that flows and flows with love to you as chirps the lark unto the tree so chirps my pretty babe to me There is not a rose wherever I seek as comely as my baby's cheek there's not a comb of honey bee so full of sweets as babe to me There's not a star that shines on high is brighter than my baby's eye There's not a boat upon the sea can dance as baby does to me No silk was ever spun so fine as is the hair of baby mine My baby smells more sweet to me than smells in spring the elder tree A little fish swims in the well So in my heart does baby dwell A little flower blows on the tree My baby is the flower to me Ten thousand parks where deer do run Ten thousand roses in the sun Ten thousand pearls beneath the sea my babe more precious is to me.

mommy2maris - 297 days ago.
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?

turtlemom - 297 days ago.
Ah, that is what I get for trying to read late at night on an iPhone.

Canadianmom74 - 297 days ago.
They are in North America, I am the one living abroad. This is why it is hard to give them the support I would like to, although in reality our prayers and a hug is all I can offer.

turtlemom - 298 days ago.
While I believe being positive is by far the best thing you can do for your baby, I would encourage you to at least direct her here. Being abroad is also a detriment. I have found that most doctors are very uninformed about true outcomes with ventriculomegaly and it seems to be worse outside of North America. Even if the baby requires a shunt, it isn't a death sentence and doesn't mean severe disabilities. Of course this is a possibility, but not normally with isolated cases. But, most practitioners are ignorant of this fact. It is sad really.

Canadianmom74 - 298 days ago.
Thank you so much for the replies. It is so good to hear stories of hope. Tomorrow she has another US and hopefully she'll get good news. Her Dr last time said he had never seen a case this severe this late in the pregnancy, so I think it is severe. I don't want to ask her too many questions as I know thay are just focussing on staying positive. They are my heros. I am living abroad, so I hear everything via email and only have the internet to get answers. I am very grateful for this site.

two-on-board - 298 days ago.
Hello Canadian, I have twins and had the same information given to me at 31 weeks also. Alongside hearing very mixed information from my medics and reading copious amounts of information on the internet this is such a frightening situation to find yourself in, your SIL is lucky to have you considering both sides of the story for her at a time when only negative information might feel real. I am lucky enough to have a next to perfect set of twins regardless of prediction or prognosis. While I know that this is not everyone's experience, there is many reasons to believe that things will be fine for her twins too. If you think that she would find it useful to 'chat' with other twin mummy's in the same situation then get her to message me. The feelings that arise are confusing enough without having two babies to consider. Late discovery of this issue can be a positive thing, or at least that is what I was told by my medics, my son's vents were not discovered until I was 29 weeks pregnant at a growth scan. Before this there was not reason to be concerned at all. It really is a floor shaker to suddenly be told that things are no longer as you might be expecting them to be, especially that far along into the pregnancy. I sincerely wish you all the best for the rest of your SIL's pregnancy X

turtlemom - 298 days ago.
Hi Canadian, I bet it can't be that severe if they just now discovered it or they would be idiots for not detecting it earlier (unless a brain bleed was the cause). You need to get the vent measurements and also the head circumference. I promise it isn't that bad b/c by the time my baby was 30 weeks, her head was that of a toddler. If that were the case, they would have mentioned it. Click on my name and read our story. Let me know the specifics and I will give you realistic expectations. Blessings to your family!

Canadianmom74 - 299 days ago.
Hi there; I am here because I need to hear some positive news. The web is so negative. My sister in law just told us that one of the twins she is carrying (my God-children)has severe bilateral ventriculomegaly. She did not give specific numbers and I do not want to hound her with questions, I imagine she'll tell us what she wants us to know. She is 31 weeks along and everything was fine until now. Everything I read online about severe cases is not good. Can you tell me, have you had people post about positive outcomes of severe cases?

kiwichick17 - 299 days ago.
will be praying for the best outcomes for you all!

kiwichick17 - 299 days ago.
How can it even be legal to terminate a post 28 week baby, hell a 32 week baby. And even later. What planet do these doctors come from where they dont think this = murder. I'm sorry i know being faced with a mentally disabled child must be very scary and worrysome. But it your 5 year ol child fell off a bike and damaged their brain would the doctors tell you that you should terminate them then? Its the same difference. It seems like most of these babys end up improving anyways. Anyone thinking of terminating dont! You will never forgive yourself and always always wonder what if.

deedee26 - 299 days ago.
Samismum! Glad to hear everything is well with baby! Am really happy for you! i know how hard It must have been for you hearing all those things that scares every mother to be! All that's left for u to do is enjoy motherhood!! Take care and happy Easter!! xxx

partyof5now (Sonya) - 301 days ago.
samismum - Such great news, so glad to hear it...enjoy the last few weeks of your pregnancy & love your sweet little boy with all your heart...cant wait to hear all about him after he is born & see some pics of this lil miracle & blessing =)

samismum - 301 days ago.
This pregnancy has been a rollercoaster ride. Yesterday, my husband and i met with a panel of doctors. Until now they had picked up on several brain defects. An enlarged cisterna magna, enlarged ventricles, short limbs, odd shape head and that the surface of the brain was not normal, eg maturation. Amnio and blood tests were normal. Up till last week they were recommending a termination. You can see in my last post, I was very unhappy and quite distressed. As far as I was concerned, yesterdays meeting was set up to help us decide as to whether or not to continue with our pregnancy. The panel were supposed to tell us what they expected the mental ability of our child would be with their findings. I am now in utter shock because in the meeting the doctors all confirmed that everything is normal except the enlarged ventricles!!!!??? The cisterna magna has corrected itself, the shape and size of the head is now normal, the limbs have caught up and the surface of the brain is normal and no cause for concern. The ventricles are still enlarged to 14mm and 16mm but who cares?? not me. I only have six weeks of my pregnancy left, I'm having my boy and and I'm going to enjoy every bit of it. Yes doctors have the knowledge, but they forget that not everyone developes the same way. Babies are in their mothers tummy for 40 weeks for a reason. My sons brain developement just came at the end instead of when the docs expected it to happen. I beleive in my heart that my son is going to be a happy normal child. To all the mummys out there experiencing this nightmare, please have hope and keep strong. Our babies are looking to us to bring them into this world. Doctors and machines can see too much too soon and they jump to conclusions. Just remember, your baby has 40 weeks to develope. I'm the happiest person alive. Every baby is a gift from God. Have faith as miracles happen. Thank you everyone especially you Sonya (party of 5 ). Your emails to my profile kept me strong.

emelcivan@ymail.com - 303 days ago.
So happy for you deedee26 :) now restart enjoying your pregnancy even more!!

deedee26 - 303 days ago.
I received some good news yesterday when I went to the scan!!! They told me that it hasnt increase, but it has slightly decrease an that's a good prognostic!becUse of that I know have to go in 3 weeks for another scan rather than the two week scan! I know it could either go more or less but right now at this moment I just feel happier! My blood test came clear! Which is also a good sign doctors where very happy with that!! Just thought I share it with u guys!!! Life is full of surprises and miracles!!

deedee26 - 304 days ago.
Going for my scan tomorrow hoping everything will be ok!! I know it's a long shot but hey a Lil bit of hope an faith is always a good thing!!!