Ventriculomegaly

How can ventriculomegaly affect my child?

Comments: Ventriculomegaly

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mylsdeniz - 61 days ago.
sunsunsun-I am sorry for your loss as well. I dont know what was wrong with your baby. I just want to write how i was feeling after I learned what was wrong with my baby , before I gave the termination decision and after the birth. The day on my 20th week scan when the sonographer told me that I need to come for another scan and booked an app. for the same day. Till to my app. I was just looking my son's US pic and thinking and dreaming about the future. At 3 oclock I was back to the hospital for the scan and the sonograher was there as well and she told me that another sonograher who has more experiences will have a look at the baby cos she saw couple of abnormalities. this was told to me and there was a silence in the room for about 45 min. I was asking whats wrong and the answer was a big silence. I was crying and looking for an answer.. I am sure all of the parents who had same/similar experiences feel the same. At the end of the US, I was told that a consultant will see me next day and my consultant will explain what is wrong with the baby. and they just told me that my baby has club foot and water on the brain. Rest of the day and all jnight I was online and trying to understand the meaning of 'WATER ON THE BRAIN' I came accross with down syndrome , chromosal disorders, handicapped babies, shunts, and lots more .. of course lots of questions. and the more important question for me was ' WHAT WILL HAPPEN TO MY BABY'. Next day after the US I was told that my baby has club foot ( I told it is not a problem for me cos there is a treatment ) , water on the brain which was about 11-15 mm on the left and right ventricle. ( If it is not a chromosal disorder , it can be treated with a shunt and my baby will be healthy. ) it was a mild case and no need to worry. and then I was told that absent cavum septum pellucidium. it will affect the organs , especially eyes and ears. he might be laying down all the time and there is no treatment for this at the moment. before going to hospital that day I prepared myself for the clubfoot and water on the brain diagnoises.and now WHAT WAS THAT ABSENT CAVUM SEPTUM PELLICIDIUM???? I had an other app for the next week. also my consultant asked one of his colleague to have a look and booked an app. with that consultant as well. I found myself travelling from one hospital to another, googling and looking for more information. and came across with that site. TURTLEMUM, i SPENT 4 DAYS ON THAT SITE AND READ ALL OF THE POSTS ABOUT VENTRICULOMEGALY. AND THIS SITE GAVE ME MORE HOPE THAN EVERYTHING. and after reading your posts and other posts I just thought that everything will be allright with my son. but consultants still could not say anything about absent cavum septum. with the shunt and cast ( club foot ) my baby will be treated and will be healty!! what about CAVUM SEPTUM ?? i COULD NOT FIND ENOUGH INFORMATION ABOUT THIS. and as I had more USs , they found out that my babies stomach was not developed and esophagus can not be seen. and doctors told me that this is what they can diagnoise with US. and they cant tell more before the bith but the only thing I was told that my baby will not be a normal baby after the bith and he will born with lots of abnormalities. having TOTATLY NORMAL BABY or ABNORMAL BABY will not change my love to him. I spoke with my partner , with my family and with the close friends about this. Ok I never thought of terminating my pregnancy. but what I have been faced and told was DONT THINK ABOUT YOURSELF , THINK ABOUT THE BABBY. BRINGING A BABY INTO THIS WORLD WHICH HAS LOTS OF ABNORMALITIES , AND LETTING HIM DEPENDED TO SOMEONE ELSE IS NOT HIS CHOICE. IT WILL ME MY CHOICE. I was told to be brave and trust the doctors. My baby was not an UNWANTED BABY. I wanted him in my life more than anything but he also worth a healty undepended life . I wrote on my previous post that my baby will have lots of operation on his first days and rest of his life. which mum wants his baby have operations ? knowing this still breaks my heart. Of course the Shunt operation will save my babies life but still heartbreaking. TURTLEMUM- your baby will grown up and live with this shunt rest of her life , I might have another babies , may be healty ones or who not.. but I will always have one of my part empty which can not be fiiled with something else. Now I am buying flowers for my baby, planting them on his grave, will be celebrating his first christmas where he is sleeping now. Instead of holding him in my arms, I am holding his memory box, instead of folding his cloths , I am folding my babies paperworks, medical reports and other letters. Instead of waiting the midwife , people from diffrent organisations like SANDS visiting me and supporting me. Instead of taking milk producing vitamines , I take antidepresant tablets. Instead of going out with my baby, I am just GOING OUT TO VISIT HIM WHERE HE IS SLEEPING.

sunsunsun - 62 days ago.
have just come across this site and have never read anything more judgemental and disgusting in my life. I am a member of several babyloss boards and have never been judged for the decision I made and be it silly I believed the Dr's when they told me my son would not survive. To the 2 ladies who had the 2 ''worst'' babies in the world and were the biggest heros in the world to continue their pregnancies with smug looks on their faces, how it must feel good to belittle others that made different choices to theirs but are ''pro choice''?? hmmmm..............If only we were all as perfect and righteous as you 2 then of course the world would be a much better place wouldn't it??!!

turtlemom - 63 days ago.
http://www.okcfox.com/newsroom/top_stories/videos/kokh_vid_4289.shtml

turtlemom - 63 days ago.
http://www.kfor.com/videobeta/?watchId=8bbb8b00-5807-497d-978a-f2b373721be7

turtlemom - 63 days ago.
Nickie, I must have misunderstood your original post. Did you also decide to terminate as well? I thought by your post that you had a miscarriage and so the response I posted below to you was posed that way. I don't mean to judge. I am pro-choice. I try to be supportive, but it seems that we have two ladies that terminated Hydro babies when I have a living daughter who had vent measurements that were more severe than either of your babies. I don't know if either of you ever clicked on my profiel and read it and it is too late now, but my daughter had a more severe case than either of yours. She is now 3 and developmentally normal. I come here to tell people the truth. If you have vent measurements under 12mm, the chance of a normal baby is 97%, if they are 13-15mm, the chance is 77%, and if they are over 15mm, the chance is 50%ish. Some people (like you, can't handle the 3%, 23% or the 50% and that is your perogative. It pains me because I have a living breathing doll. If she wasn't 'normal' I wouldn't love her any less. We did have a miracle but, we were prepared for what would have happened if she was profoundly disabled which is what could have happened. Obviously, you weren't. That is fine. Some people aren't cut out for that.

LDMusgrave - 63 days ago.
Nickie, I am very sorry for your loss. I must explain to you, though, that while it is unlikely for children with crushed brain mass to develop on a normal schedule of milestones, and also have a higher risk for problems such as seizures, shunt malfunctions and/or infections and have many hospital stays, Turtlemom's daughter, and my own daughter had much less than 1 cm of brain tissue left at birth. We both had very severe cases that continually worsened as the pregnancy went on. And while I repeat, it is unlikely, both of our daughters are on the other end of the 'worst outcome' scenario. They currently have no delay whatsoever. The brain is an interesting organ. It can adapt and rewire itself in amazing ways.

nickievbarron@lineone.net - 63 days ago.
Mylsdeniz....I am so sorry for the loss of your little one as well. It's just heartbreaking to have to make the decision. Turtlemom...the Neurosurgeon said that the pressure of the fluid had crushed the brain mass. We could clearly see it on the scan and you can actually see it on my 20 week scan picture as well once you know what you're looking for. We asked for the surgeon to give us an honest opinion as we didn't want to be given a 'bit' of hope and then to find the scenario getting worse as the pregnancy progressed. Once he was born, they took blood and some cord and he also had a PM. We are awaiting the results. The Neurosurgeon said he doubted it was chromosomal and thought that it was a brain developmental problem. A 1 in a 1000 chance. If I had a child that was injured in an accident and was left brain damaged or handicapped then I would of course deal with it at that point and love my child none the less. However, the thought of bringing a child into this World that would have had a shadow life of pain and suffering was pretty clear cut for me and my partner. We made the hardest decision of our lives that day and we will live with that for the rest of our lives. However, I KNOW in my heart that it was the right decision for us and for Albert.

mommy23soon - 63 days ago.
Turtlemum - I just want to say that after I read your posts, I always feel a little more confident that no matter what happens after my little ones are born - everything will be fine and work out. I will always be my babe's mum and love him no matter what the medical outcome. My hope is that everything works out after the birth of our twins in the upcoming weeks, but if we don't get our 'perfect' scenario - that's ok too.

mylsdeniz - 63 days ago.
Turtlemum you are right. What i will do if my child had an accident and become depended to me or to someoneelse? i will still feel the same. I will be upset and I will be there for my child forever. I thought about everything before I gave my decision. And be sure that it was really hard for me to give this decision.. And pls don’t forget Here is not a place for judging other mums. I really wanted my son to born and have a healthy life . Same as you. I had more than 10 U/S after my 20 week gestation till to 30 week. and all of my U/S results came out worse than the previous U/S. I had sleepless nights , red eyes and tears falling down all the time. My baby was not an unwanted baby. I am missing him so much. I still have sleepless nights and tears falling down.

thinkpink2010 - 63 days ago.
I am so sorry for the lose of life these two families experienced. All parents that are given a diagnosis of ventriculomegaly (or ANYTHING wrong in the brain) have tough choices to make. It's not an ideal situation EVER, but God has a plan for our little miracles. I am sorry for your suffering. I just want to use this site to give people hope and say that (like turtlemom) my little man brings so much joy to my life!! I wouldn't change him for anything. I am thankful that he had a really great outcome, but I would love him no matter what. It's a tough place to be, and I don't hope for anyone to have to come to this forum.... but if you do, I want you to know that GREAT things can and do come from our bundles of joy.

turtlemom - 64 days ago.
mylsdeniz, I'm sorry you had to make the decision you did. I hope you heal quickly. As I stated below, in isolated Hydro cases, the prognosis is much better. It seems with a MISSING??? stomach this was not the case with your boy. That seems odd that he would have been able to devlop at all without a stomach? Anyway, you are correct that he probably would have required a bunch of assistance. But you are incorrect that a surgery in his first days would make you more upset. My daughter had one of the most severe cases of Hydrocephalus around. She had a shunt surgery (brain surgery) 24 hours after birth. This surgery saved her life. I kiss her shunt (the hardware in her brain) that saves her life everyday. Even though it was a rough road in the beginning, I would not change a thing. My daughter is the joy of my life. I love her more than anything. She is awesome. She will probably depend on me for the rest of her life and that's okay. I'm her Mom. WHat would happen if you had a healthy baby and that child got mamed in a car accident? Would you not take care of that child for the rest of his/her life?

turtlemom - 64 days ago.
Nickie, I am so sorry for your loss. I have never heard of an isolated case of Hydro causing death. Typically, There had to be something else going on for your LO to have perished. I am so so sorry that this happened to you. Did you have an autopsy? My guess is that there was something else going on and that is by your baby was born sleeping. Even the most severe case of Hydro (and my daughter was one of them) would not cause death. Blessings to you and yours!

mylsdeniz - 64 days ago.
I wanted to update my story which was ended sadly . My little son's U/S results on the 29 th and 30 th week came out with an unexpected results. My baby's brain was not developing because of the presure and the stomach was missing. Left and right Ventricle measurements was around 20 mm and one week later is was increased to 25 mm. also 3rd ventricle was increased to 5 mm. My consultant told me that my baby will be handicapped and will be depened rest of his life. Me and my partner gave the hardest decision in our lives. And terminated my pregancy on 24.11.2011 and gave a stillbirth on 26.11.2011. It was a very bad experience for me. I really wanted this little man in my life but I did not want him depended to someone rest of his life and having lots of operations in his first days and rest of his life will make me more upset. I am missing him so much. My babies MRI ,cord blood and plaesenta results will be sent in 2 months time. I will be sharing the results and the causes of his illness with you. i am praying for the other babies here . I hope all the pregnant ladies here will have healthy babies.

timmpierce@gmail.com - 64 days ago.
Nickie, so sorry to hear your story. Life can be terribly cruel. I hope you manage to recover to some degree from your experiences.

LDMusgrave - 65 days ago.
At 20 weeks pregnant, my daughter's ventricles measured 24 mm on both sides. Her head was large at birth and we required a c-section. She just turned a year old and had a wonderful birthday party yesterday. By the time she was born, her ventricles measured 70mm and 32 mm. We were told that there was no way she could lead a normal life and were encouraged to terminate. I didn't listen to them and continued the pregnancy... I gave it all to God. We are beyond blessed... she crawls around, close to walking, and has absolutely no delays. Her smile lights up my world. I just want everyone to be aware of the 'other' side of the 'worst case scenario.' I realize that there will be many different outcomes for everyone, but please, never give up hope. <3

nickievbarron@lineone.net - 66 days ago.
Sadly my story has a very sad ending. My partner and I used donor egg and donor sperm due to dual infertility issues. At my 6 week scan there were 2 heartbeats but sadly only one was still there at the 8w scan. All was well at the 12 w scan. I heard the heartbeat at 11w and 16w. I started to get a little bump by 18w and felt the baby move from around 17w. Sadly at our 20w scan our World was turned upside down. I noticed that the baby's head measured 22w when I was only 20w and was immediately on alert. We were sent for a walk as the Sonographer said she couldn't see the spine properly. When we returned we were scanned by another Sonographer (now we know it's due to them wanting to get a second opinion) She kept measuring the head and eventually turned to us and told us that sadly there was a problem with the baby and that we would have to see a Specialist Pediatric Neurosurgeon the next day. We were told the baby had Severe Ventriculomegaly and gross hydrocephalus. Clearly we had no idea what this was and once we got home we googled and our World fell apart. I still had my notes at that point and the more I discovered, the more my partner and I cried. Our baby's ventricles were 18 and 19mm so way past the 'norm' We barely slept that night and the next morning we made our way to another hospital to see the Specialist. My eyes were swollen from crying. I was scanned again. The Sonogrpaher never said a word and the Neurosurgeon just watched the scanning until he said he had seen enough. We were told that our son's head was already enlarged due to fluid on the brain. The brain mass was crushed beyond repair and the damage was done. If we decided to continue the pregnancy then I would have to have a C section at 32 weeks as his head would be far too big to let me go any further. There was a risk that i could be damaged internally as they tried to get the baby out and there was no chance of a natural birth. If he survived the birth ( and the Pediatric Neurosurgeon said he doubted that) then he would be severely handicapped. My partner and I cried so hard. My son was born 4 days later sleeping. He was so beautiful. I miss him every day.

timmpierce@gmail.com - 67 days ago.
Hi Katie, it's great to hear from someone in the same boat! Sometimes I just love the internet. It sounds like you're doing all the right things and judging by your recent measurement it looks like your little one is on track :-) This whole thing is absolutely terrifying, I'm so glad this board is here. Keep us updated and I really, really hope things work out. Tim.

katieandiggy@tiscali.co.uk - 67 days ago.
Tim, your situation is identical to mine! My baby's enlarged vent was found at 33 weeks, my 28 week scan was fine! I also had CVS In early pregnancy which was clear and I was also told 90% everything will be fine. My consultant has measured the ventricle almost weekly and it's stayed the same. I went for scan yesterday I am now 37+3 and she could not see any enlargement of the ventricle! I'm still cautious. When I found out I started taking the DHA supplement I am taking 350mg per day which isn't a lot, but I'm also eating salmon, mackrel and walnuts. My consultant said the baby could have had a viral infection and that may have caused it, but we truly won't know until he is born! Also one other thing, this condition is Soooo much more common in boys as they often have larger vents so it could just be a variant of normal. Best wishes Katie

timmpierce@gmail.com - 67 days ago.
Hi there. Like most people on this thread, I got here by frantically googling Ventriculomegaly after a horrible ultrasound yesterday. My partner is 32 weeks pregnant with our son and yesterday they spotted mildly enlarged lateral ventricles in our little ones brain (13mm). This is the first sign of this, our 22 week scan was perfectly normal and we also had an amnio earlier in the pregnancy which was also normal. In fact we have been high risk since the start due to my partners epilepsy medication (we've been told that is probably unrelated to this, but who knows). There are no signs of any other abnormalities which I suppose is a good sign. Right now we're clinging to the '90% are normal' statistic the O/B gave us .....and I've also asked my partner to take more DHA supplements and start scoffing walnuts ASAP!! I have to say that this message thread is enormously helpful and reassuring. We'll keep posting on here with our baby boy's progress. I'm not religious at all, but if I was I would be praying right now! Tim.

mohana_desilva@hotmail.com - 69 days ago.
What a great story sherbear. I like hearing such great news! I am due in 2 days. I hope the MRI results are good after the baby is born.

katieandiggy@tiscali.co.uk - 69 days ago.
Hi I just wanted to update on my situation. My son was diagnosed with mild ventriculomegly at 33 weeks with the left vetticle measuring 11.5 mm I had already had a CVS in first trimester which was clear. My TORCH test was also clear. I saw my consultant at 34 weeks and the ventricle measurement was between 10-11. I have just seen her again, I'm 37+4 and she can see no dialation of the ventricles at all! she didn't even measure them as she said they were so small. I am obviously really happy but still very cautious. It's been a rollercoaster 4 weeks for me and I'm so glad I found this site which gave me great hope. My son will see the paediatrician when born, he is going to call me shortly to explain what will happen once born. My induction is booked for 23rd Dec, so I will keep you updated on what happens after he is born. Sending my prayers to everyone.

LDMusgrave - 69 days ago.
sherbear, awesome testimony. I wish docs would stop being so gung ho on the termination.

sherbear - 69 days ago.
Thank you Cheerdizzy, same to you! Continued blessings to you and yours!

cheerdizzy883 - 69 days ago.
sherbear, that is awesome news!!!!

sherbear - 69 days ago.
Hi, I just wanted to share my story and say thank you to everyone who contributes to this subject. My husband and I went in for the 20 week anatomy scan one month ago. During the scan the tech did not indicate that she saw anything wrong. After she finished the scan she sat there and typed up a report for what seemed like an eternity. She left and said that she was going to have the doctor review the scan. After what seemed like another eternity later she reinters the room with the doctor on call and a genetics counselor. Everyone had a sense of anxiousness and panic through false grins on their faces. The doctor told us that our baby boy had unilateral ventriculomegaly. We had never heard of this before so we did not know what it meant. The doctor then went on to tell us information that she didn’t even seem sure of… She said that the baby had unilateral ventriculomegaly which meant that left and right were asymmetrical which meant (according to her) this was a lot worse case than if both sides were big but symmetrical. They told us this is a marker for Downs. And she told us that the right vent was 11mm and the left vent was in normal range. Then they told us to go have a conference with the genetics counselor. The genetics counselor went on to tell us that I needed to take an amnio and that a blood test at this point would just lead to confusing results and wouldn’t really tell us anything. And she went on to tell us that we needed to make a decision on termination in two weeks, otherwise we would have to go out of state for termination. She said I could just hop on the table and get the amnio right then because it will take about 2 weeks to get the amnio results back! We were devastated. I felt so upset and was trying to hold back the tears. My husband was trying to remain calm for me. My obgyn was on vacation… and I wasn’t scheduled to see her until the next week. I didn’t know what to do or think. This is my first baby, and here I have professional doctors talking about terminating the pregnancy! I couldn’t believe they could just so casually suggest that based on one tech’s measurements of one vent. They had told us that everything else in the baby’s scan was all good and normal. I had the First Trimester Screen done at 12 weeks and everything came back negative for downs. I was against having the amnio done because I have huge fibroids all over my uterus, and I didn’t have confidence in these people that just reviewed my case 15 minutes ago to properly conduct the amnio without piercing one of the fibroids which could have let to more complications. I told the genetics counselor we would get back to her on the amnio decision. I came home devastated. I felt truly hopeless until I found this forum. Something told me to email my obgyn even though I knew she was on vacation. She is a high-risk specialist that I was referred to at 8 weeks because of the large fibroids that I have. 2 days later… 3 days before her vacation was over, she responded to my email. Finally I had a voice of reason. She told me that the 11mm was really very marginally above the cut off which was 10mm for “normal”. She said that most of the time, this resolves completely and has no complication with it. She said that in a small portion of infants with this, it is a marker for other issues, such as chromosome problems, infection (with Cytomegalovirus), and has been associated with a higher than average rate of learning issues. She also said, recall that those occur in something like 10% of the population already. She said that clearly the more the dilation, the more the association and at this slight increase everything looked fine. She suggested I ride it out and not do any testing especially since my first trimester test was normal. She suggested that when I cam in to see her on my visit the following week she would do a blood test just to rule out the CMV virus mentioned earlier . She ended the email to say, overall I shouldn’t worry about it, and that it is very likely to end up normal. After reading her email I finally felt as though I could breath. I was so mad at the other doctor, the ultrasound tech, and the genetics counselor that that were so quick to suggest invasive procedures, a horrible outcome, and termination. Apparently CMV is a common virus that most of us have run into when we were little kids, and built up antibodies for it. From the way it was explained, it can only threaten your infant if you caught it for the first time while pregnant. When they do the blood test they can tell if you have old antibodies… meaning you had it as a kid and therefore no problem for baby… or if your antibodies are new… meaning you caught it more recently and they need to treat you with antibiotics. Well, my blood test came back negative. I did not get an amnio or any other testing and just chose to ride it out and see if the 24 week scan was any better as my obgyn specialist suggested. After reading this forum I saw where some women increased their DHA intake. So I thought I can atleast do that, in hopes of trying to do something to help our baby as much as possible. I switched to a new DHA supplement and doubled the dosage. I am not good with pills so I started taking a daily DHA soft chew made by Bellybar. Each chew is 200mg DHA. I started taking 2 of these in the morning and 2 of these in the evening (total of 800mg DHA), along with a Bellybar prenatal chewable vitamin. Yesterday my husband and I went in for our 24 week scan. We switched to the hospital where my obgyn is located to get all of our scans done. We got our previous scan done at their satellite office that is closer to our home. Yesterday while the ultrasound tech was doing the scan she kept studying the baby’s brain and I felt myself starting to panic. She looked at it for such a long time at several angles. Finally I had to ask her “do you see anything abnormal? We were told the baby had unilateral vents at my last scan.” She said she saw that in the previous tech’s notes but said that today the vents were measuring about the same thing. I asked her what they measured and she said she would let the doc study the measurements and let me know. She left the room and a few minutes later the doc came in and said that both vents were measuring 8mm. She also said that the previous measurement was not 11mm as the other tech had said, but it was 10.3mm. Why did the previous doc/tech tell us 11mm when it was 10.3mm??? I don’t know. I was just so happy to get these results yesterday. I don’t know if it was the praying, the extra DHA, or if vent size is just something that tends to correct itself over the course of pregnancy. But either way, I just hope this story gives someone out there hope and some peace just as so many of your stories gave to me. This gave me the first lesson in being a mom, that I have to fight for the health, happiness, and safety of my son even in the face of those that think they know better.