Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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cheffreda - 57 days ago.
I am 22 weeks they saw it in the 20 week ultrasound. I have just decided to opt out of the amnio as I will not terminate no matter what. I have already had an mri on the baby too.

katieandiggy@tiscali.co.uk - 57 days ago.
Cheffreda- personally I stayed with my regular consultant. I didn't know about my baby's vent until 34 weeks. I had a 28 week scan at a fetal medicine centre and that had a good look inside the head then and all was fine. It was only at a routine growth scan it was picked up. I had already had a CVS in first trimester which was clear, my consultant arranged a TORCH test and that's as far as ive taken it. I'm going to have this baby no matter what so I will just be consulting with a pedi when he is born. How far along are you? If it's something that's come up early in pregnancy may be worth going with a high risk OB.

cheffreda - 57 days ago.
My baby has mild VM at 11. For all you going through this did you switch to a high risk doctor or continuing using the same ob?

two-on-board - 57 days ago.
The UK is far more conservative in highlighting the research that has been done on VM, the hospital that I attended had done more than three studies that I know on the prognosis of antenatally detected VM. A medic that I saw did suggest selective termination of my twin son to me as an option when I was 29 weeks pregnant (with the risk of harming his twin sister) but when I saw the specialist he did not suggest it at all. My son went on to be diagnosed with agenesis corpus callosum, a relatively new structure of the brain to be identified by US - an MRI scan confirmed this when I was 31 weeks pregnant. My specialist thought that this was good news! I was petrified. What I will say is, that without extra scans for twins, I would be none-the-wiser about by son's diagnosis - he is lovely, a welcome member of our six children. This does not stop me remembering being offered the choices that I was, or the fact that once mentioned I ruminated on the decision that I made to continue with the pregnancy and whether this was the right thing to do, I could not believe the positive comments of my specialist, and dont for a moment believe that I would have been influenced by another person's positive experience with their child. I do not envy anyone faced with this decision, but know that it would be one made with much thought and personal soul searching. No one else would truly understand that. Turtlemom understood, she listened, she took the time to remember my scans and virtually held my hand when I needed her too, this was before she knew that she had such a positive outcome with her little girl. That is what I needed, something that I did not feel that anyone else, having not been through what I was going through understood. For that I will be eternally grateful. It is also why I drop into the forum every now and then, am careful not to suggest that my outcome may be others outcomes, which is something that Turtlemom is clear on too. It has been very sad to read the postings on this forum for the past couple of weeks, never has it felt that the support has been so divided, it feels as if what we are forgetting is that we are all in pain, we all want what is best for our children, children that are here and children that are no longer with us and the suggestion that there maybe something 'different' about them is a hard suggestion to digest.

nickievbarron@lineone.net - 58 days ago.
Sunsunsun - I agree that here in the UK little seems to be known about VM. I have come across very little research from the UK. We were just advised to terminate and given worse case scenarios. The Neurosurgeon did say that if I searched online, I would find miracle stories....but even these are few and far between. Perhaps termination is offered more openly in the UK as we have a very underfunded and overused NHS. I think most people in the USA have to have private medical insurance. Since losing Albert, I have googled and joined other forums and met 3 other ladies whose babies were diagnosed with VM.One chose to continue her pregnancy. Her son's ventricles were only 11mm and 13mm at 20 weeks and yet she was still advised to terminate. She had to have a CS at 26 weeks as she developed pre-eclampsia and HELLP syndrome. Sadly her son is very poorly and has a lung infection and is on his 3rd blood transfusion. She and her husband have been told to take it day to day. The other 2 ladies chose to terminate. Turtlemom....if your friend in Devon is happy to adopt a child with handicaps/disabilities then she should have no problem being matched for adoption. My friend and her husband have just adopted and said they did not want a child with any disabilities and that's why they had to wait longer to be matched. I do, however, think that by insinuating that myself and other ladies that chose to terminate, should have had our babies and put them into care for others to adopt is (yet again!) another offensive, upsetting and ridiculous opinion!

trinam - 60 days ago.
timmpierce@gmail.com - I lost a child at 30 weeks due to aqua stenosis (narrowing of the 5th ventrical) and hydrocephalus... I was a 'Christian'. I went to church. I volunteered. I was a good mom...a good wife... And yet being all of these things did NOTHING to 'protect' my child. I got VERY angry at God. I started questioning EVERYTHING that I thought was true. It shook my faith to the core. That was 16 years ago. I still question... I'm still upset... Sometimes I ping pong between 'God gives us free choice, there for bad things can still happen to good people' and ' there is no God; we just made him up to make ourselves feel better... Less alone...' But when I'm quiet at night, deep down inside, I NEED to believe in SOMETHING because the thought of my 3 children (we also had a loss at 13 1/2 weeks and 14 1/2 weeks) being 'nowhere', and never seeing them again makes me so fundamentally sad. I NEED there to be a God... But quite frankly, that's MY choice, and MY need... I respect your feelings, your hurt, and your anger. I understand... And it's OK! ;) <3

Rcdierks@gmail.com - 60 days ago.
Yes turtlemom! I did receive bunk info from a peri in a top ranked hospital. Your continued information on this board and others help me...you will never know. For that I thank you!

turtlemom - 60 days ago.
Just for the record, I received a pm from joanofark saying she was wrong and I wasn't the offender. It would have been nice to have known that before I spent the last hour milling through pages 63-47 worth of comments trying to figure out who I offended. I was way more docile 3 years ago. I'm getting mean in my old age. ;-) I really don't mean to judge, I just want to inform, bc I really believe there are soooo many that get bunk information and take it as gospel from their practitioners.

turtlemom - 60 days ago.
Joanofark, Wow, I didn't realize I was sooo popular. I can't believe that I actually offended someone three years ago and you decided to tell me about it now. My daughter would have been several months old at the time when we thought she was going to be blind. We had no idea that she was going to be normal three years ago. I may have been positive about taking care of a special needs baby, but my outlook was way different then. If I scared your 'friend' sorry bout that. I spout the truth. I tell my tale. I try to make people informed and back it up with empirical data. Guess she wasn't too isolated as you know about not only me, but this board.

mumbojumbo - 60 days ago.
There is a lot of evidence for God. It would not be possible to present all of the evidence here on this discussion board. Once again, I was not the one who brought God in to this discussion board on ventriculomegaly (a non-believer did, and I quoted what that non-believer wrote in my last posting). Again, please answer this question: Why do non-believers always talk about God if they don't want to hear the truth about God? Once a believer stands up for God, the non-believers begin to mock us and tell us that this is not the place for God. I have not once called the non-believers names or mocked their beliefs. Yet, in just the last few hours non-believers have called believers 'happy clappers' and referred to our beliefs as 'fairy tales'. Then the non-believers have said THEY were offended. Interesting, huh?

turtlemom - 60 days ago.
I heart Linds & Marley!

LDMusgrave - 60 days ago.
This board is the first place I found when I was searching frantically for answers at 20 wks pregnant, a little over one year ago now. I didn't even know what my daughter's ventricle measurements were. After researching online, I actually called the doctor back that very night to ask what the measurements were. At 20 wks, her ventricles were both 24 mm. And they got much, much worse than that by the time she was born. I didn't know if I should have fought for her life or have an abortion. But turtlemom reached out to me. I read her story and I cried and found hope. I could not imagine life without my daughter today. I am sorry if I've offended anyone with my beliefs or by telling everyone how our story has played out. I do check this board often- to pass along hope and educate expecting moms- not to preach, pressure, or offend.

turtlemom - 60 days ago.
I would like to give a sincere apology to sunsunsun, Nickie & mylsdeniz. My heart does go out to you three (sun, by your original post with no reference to vm and your abrupt entrance to this board, I thought you just popped by by chance). As I said previously, I am pro-choice. I believe another should make informed decisions. I do believe that there are vast differences in the healthcare here and abroad. There was a little boy born at the same time as my daughter in Ireland with Hydro and also a rare skin condition. It pains me to say he passed last year and I believe it was because of malpractice. The boy had a seizure that lasted days and then his little body finally gave out. From the mother's account, the hospital did nothing to stop it. I think had the child been here, he would have lived. And, I've known several Hydro babies in England that they didn't want to shunt and they wanted to send home with hospice. Luckily, they were members here and we told them to fight. But, what about the moms that aren't here? Anyway, I completely agree with Jenn and always use Jude as an example of the 3% (sun, you asked why some are asked to Tx with small vent measurements - this is a possibility). Even if you get a vent measurement of 11mm and it goes back to normal in the 3rd trimester, there still may have been a stroke causing permanent damage. Jude is part of that 3%. My daughter is part f the 50%. I have been around here for 3 1/2 years. My Godson who is 5 has acquired Hydro. My dear friend runs a hospital in Mbale, Uganda that specializes in Spina Bifida and Hydro cases. Talk about 3rd world. And, my college roommate lives in Devon, England and desperately wants to adopt. She would have taken your babies in a heartbeat as she has been in the process of trying to adopt for almost a year now.

katieandiggy@tiscali.co.uk - 60 days ago.
Wow things are Getting a little heated around here. Changing the subject- just to say i am being induced next week at 39 weeks due to my baby's size. I will keep you updated with his progress, I am really nervous at what to expect when he's born.

timmpierce@gmail.com - 61 days ago.
Mumbojumbo - if there was a god (and there is zero evidence that there is), he/she must be a particularly nasty and vindictive individual to allow babies to develop these horrific conditions. These babies have never committed a 'sin', so why them?!! These conditions arise due to genetic, environmental and physiological reasons. Believing in fairy tales might make YOU feel better, but please lay off the preaching.

sunsunsun - 61 days ago.
Oh, I also forgot to say CJENGO, I thought your post was very eloquently written. Also after reading back through other posts It's quite worrying the number of parents who are actually offered tx's with what I consider to be fairly small vent sizes?? My sons were both 22mm at the 20week scan.

sunsunsun - 61 days ago.
Turtlemom, I do have a relevant situation as I also made the heartwrenching decision to induce our son earlier due to enlarged vents in the brain and also malformed brain. I am fully aware this is not a babyloss site and I suppose I come here to punish myself and look at the stories that could have been me and my son. Believe me nobody has to beat us mummies up or make us feel guilty as we do this to ourselves. I can totally relate to people coming here for hope and I only wish I had found this site before we made our decision and perhaps we may have also found the strength from reading these stories but what I did object to was turtlemom wasn't offering helpful info as these mummies had already stated they had let their little ones free and so to me it read as rubbing salt in the wound by suggesting they go and look at her daughter who I have looked at on many occasion and she's very beautiful and I feel gutted everytime I look at her :-( Also as the 2 miracle mummies have themselves stated on many occasion their children are in the minority so not all tales will have the happy ending that most mums here crave. Also I feel it very patronising for turtlemom to say not everyone is cut out to look after a disabled child, but also the other side of the coin is that not everyone is prepared to put their child through countless operations and pain when you're not certain of the outcome. Yes, admittedly I am guilty of being weak and putting my trust in the dr's and believing what they told me but I am by no means guilty of loving my child anyless than those that chose to continue with their pregnancies. Now the biggest point I have to make is the HUGE difference between us in the UK and you in the USA. You are more advanced in your medical practises than we are here and the dr's in the UK seem scared to take anything on that is not within what they class as 'the norm' In the US I think the dr's have a much better understanding, possibly due to your population being so much bigger which means a lot more babies will be diagnosed and is more widely seen than it is here. I also spoke to many dr's and a neurologist and I was made to feel terrible for even considering to continue with the pregnancy especially when I already had other children to consider. This mixed with the absolute terror and fear I felt over that time period took us down the early induction process at 22weeks which led to my son being born alive, dying in my arms 20 minutes later and having to attend an inquest into his death. Believe me this has been no easy option, when those dr's told me my son would be in pain and brain damaged, prone to seizures which could kill him, may never leave hospital and possibly die before birth I thought it was the only option available at the time and not one person said to me these are the other options if you continue, not one, which I am truly sad for. I think about my son every second of every day and look forward to the day I die when I will get to be with him again but until then I have to live with the decision I made.

mumbojumbo - 61 days ago.
We all have babies with ventriculomegaly among other things, so there is no need to try to close your mind to the truth and belittle others. Attacking God will not ease your pain! Believing in him will save you! A non-believer was the one to mention God first, and I was simply defending my faith. Is it the protocol of this message board that non-believers can write blasphemy about God, but that believers like myself must remain silent? If you don't want to hear the truth about God, then why do you bring Him into this? This is what the non-believer wrote: "Perhaps I should have read the TWO miracle stories on here and 'given into God' like other happy clappers have and received my own miracle! I really want to delete all my other posts..."

nickievbarron@lineone.net - 61 days ago.
CJENGO.....thank you for your honest and frank account of life with Jude. I also got told that some babies are left in hospital or put into care by parents at a later date as they realise the true extent of their handicaps and discover too late that they cannot deal with the situation. Mumbojumbo....as Turtlemom commented to another poster earlier about this not being a baby loss board, I feel it's only fair and right to comment that neither is it a God Squad board. People come here to learn and research about Ventriculomegaly and not to be faced with religious clap trap. For non believers it's very offensive. Are there Moderators on this board? Perhaps if so they could remove Mumbojumbo's.......mumbojumbo! Thank you.

mumbojumbo - 61 days ago.
You know folks, there is no excuse for anyone to insult God and those that love Him. Physicians are wrong a lot of the time. There is a lot that medicine doesn't understand. But there is nothing that God doesn't know! Remember, no man is righteous. Believers have Christ's righteousness imputed upon us. That is the gift of faith. The only judge is God. It is our job to love one another as Christ loved us. Man can't predict what glory God will reveal through the most disabled, handicapped person. PLEASE do not trust in man. Trust in God!

CJENGO - 61 days ago.
I have to agree to a portion of this. I too sometimes feel like people on here (and other places) can be a bit judgmental if someone decides to terminate their pregnancy. Although, I also understand that everyone on here is very emotional and dealing with their loss, hope, good news, or bad news in their own way. I come on here to try to share stories from the positive and the negative side. I sometimes get a bit irritated when I hear people pushing people to follow through with their pregnancy because I feel they are emotionally or religiously swayed. We all want every one of these babies to be perfectly healthy.........but the unfortunate realistic truth is some are not going to be born that way. My Jude is amazing, but make no doubt that our life is HARD! One day when I was sitting in my doctors office the doctor looked at me and said 'You look tired Jennifer'. I replied 'I haven't slept in years........and this is hard, but I love Jude very much'. He said 'Jude survives and looks so great because of you and your husband. Just last week I had a couple give birth to a baby that was disabled....they had no clue prior to the delivery the baby was going to be in this condition. They walked away from him and told their family he had passed away'. I replied' They left him AT THE HOSPITAL??' He replied 'Yes..........it happens all the time.'. I was stunned and when I asked Jude's other doctor about this fact he agreed that it happens on a regular basis. I look around at many people I know and I know they couldn't care for Jude. That doesn't make them bad and me good it just makes us different. The point is that I try not to be judgmental or let me own personal beliefs interfere. If someone emails me in regards to their situation I usually repeat the same sentences I always do. Educate yourself! Get all the information you can on the baby's condition and then make a well informed rational decision based on your capabilities and your family's means. If you have the emotional and financial capability of caring for your child regardless of their condition then march forward and love that baby with ALL YOUR MIGHT. If you think the special needs would be to much, or unfair to the child (due to pain and a shortened life span) or for other reasons then terminate and I will not judge you. I am ever holding a white flag of peace for both sides of this argument because I have had one foot standing on both lines before. It's a hard decision to make.

thinkpink2010 - 61 days ago.
This forum is not here to judge people. When my son was diagnosed I was just like all the other moms who find this site. I was searching in desperation... it was a scary search. This place did provide some sense of hope. I told myself that if my son did well I would come back and try to pass some hope on. I am sorry that ANY of us have to visit this site, but I do feel like I need to tell my son's story and offer some hope to parents who need it. turtlemom has been here many years and doesn't continue to post here for her own fun, she does it because she wants to educate and encourage. I think that comments were taken out of context and have gotten twisted. This site is about support and trying to find answers.... I think that we should keep it that.

turtlemom - 61 days ago.
Sunsunsun, this isn't a baby loss board. Unless you have a relevant situation, your comments are unwelcome, IMO. I'm here to give the facts. Moms can do what they will with that information. We were very lucky. My doctor never once suggested termination. I know I'm in the minority and it made the diagnosis easier to swallow. But I do think the fact that I had a more informed doctor made everything easier. And, we aren't the only two miracles around. Our FB group had 260+ Hydro members. About half have the disabilities you fear and about half don't. Mylsdeniz, your situation was completely different. All of my stats are geared to isolated Hydro cases. Your baby did ot have isolated hydro. This makes the prognosis much worse. I was not in your shoes as we knew my daughter had isolated Hydro. My advice is that you gather as much information as you can. And Doctors do not know everything. Our Pediatric NSG never gives prognosis. I once asked him why. He told me it was because there are stories like ours that surprise him, and there are stories that have the opposite outcome. Sounds like your NSG could learn from him, Nickie. Or, the quality of care is different abroad? I do agree that most children with enlarged vents get tx'd mainly bc of practitioners like yours. Pity.

LDMusgrave - 61 days ago.
I don't have any smug look on my face. I'm simply trying to educate you to the realistic possibilities that the doctors almost always forget to inform you of with a severe diagnosis of hydrocephalus. I am very sorry for all of your losses, but while turtlemom is pro-choice, I am not. I am pro life. I will not berate anyone for the decisions they have made. It just makes me sad. I'm sure your pregnancies were very much wanted and I will continue to pray for your peace.

nickievbarron@lineone.net - 61 days ago.
Sunsunsun...I have to applaud your comments. I searched and searched for articles about Ventriculomegaly as it seems little is really known about the severe form. What I soon realised was that that was probably due to the fact that most people diagnosed with it chose to make the heartbreaking decision to have to terminate a much wanted baby and were left feeling so bereft and heartbroken that they would never even think about posting on a forum for fear of backlash for their choice. I came across this site looking for advice. Instead I feel that I have been judged and almost chastised for making a decision (and let me assure you that this baby was my 5th attempt at IVF and we had spent over £30'000 on treatment so it was not an unwanted, unplanned or unloved baby or a decision that we took lightly!) that absoutely broke my heart. To have to read that I should have read a profile but 'it was too late for me now'(!!!!!) made my blood boil. Perhaps I should not have listened to a Pediatric Neurosurgeon with 30+ years of experience in this field of work. A man who came across babies with this condition and who saw the pain and suffering daily. A man who would surely not have put his career on the line by advising me to terminate my wanted pregnancy if he thought for a nano second that he was giving me false hope or mis-diagnosis! A man who did not even give me the odds of 50% of having a baby that would be healthy and meet any milestones. Perhaps I should have read the TWO miracle stories on here and 'given into God' like other happy clappers have and received my own miracle! I really want to delete all my other posts but hope that by leaving them I am showing some women that they have not made the wrong choice or decision and that they are not alone in their sadness. Mylsdeniz...please don't feel you have to justify your decision. The grief you are dealing with is enough in itself without beating yourself up anymore.