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Severe ventriculomegaly diagnosed at 20 weeks

(92 Posts)
Sep2299 Tue 17-Nov-15 05:43:47

I posted this yesterday (copied and pasted below) in the main pregnancy board and was advised to try posting here...has anyone been through something similar to my situation?

"This is where there is excess fluid on the baby's brain, which is usually only picked up at the 20 week scan, not the 12 week scan.

The left ventricule is 7mm which is normal (should be 10mm or under) however the right ventricule is 19mm which is classed as severe.

Waiting for a more in depth/detailed ultrasound with a specialist to see if there are any other abnormalities, however nothing else was picked up on the 20 week scan apart from this excess fluid on the brain and the shape of the head.

Can't help fearing the worst...but hoping there are some positive stories out there?"

Sep2299 Tue 17-Nov-15 05:46:53

We had the detailed ultrasound yesterday and they have picked up further complications as well as confirming the excess fluid on the brain and abnormal shape of the skull which is linked to some syndrome.

We are going ahead with the pregnancy but are unsure of what tests to undergo at the moment.

In a state of absolute shock...has anyone experienced anything similar?

Would really appreciate some advice/support.

DorothyL Tue 17-Nov-15 06:51:54

We had the same at the 20 week scan. Over the second half of the pregnancy we had lots more scans and were eventually told our son had a skeletal dysplasia. He was born at term. He's had various issues but is now nine and doing well.

Gizmo2206 Tue 17-Nov-15 13:45:15

No advise or help. But wish you well for your pregnancy! X

lefty82 Tue 17-Nov-15 20:54:16

Hi sep2299, we are going through a similar thing. Had no complications until the 20 week scan last week that found enlarged ventricles of 18mm and 22mm. Everything else was fine with heart , spine and feutal movements etc. Had the 2nd scan today with a consultant with didn't really tell us much more, just to expect the worst because of the severe size of the ventricles. Blood tests have come back negative for infections and have decided not to to have the chromosome tests. Having an mri this week an meeting with neurosurgeon when get results. Hope things work out for you.

twotimestwo Wed 18-Nov-15 19:16:12

My DD had ventriculomegaly, with measurements of 22 and 24mm at 21 weeks. We had a fetal MRI which confirmed this and showed delayed sulcation (folding) we had Torch analysis (clear), but refused any invasive tests. We were told she had a 95% chance of severe disability. She was born at 34 weeks (unrelated to ventriculomegaly) and after birth an MRI showed her ventricles to be 12 and 16mm. She is now 4 and has no disability or delay. Thinking of you both, it is an incredibly hard thing to go through.

Dale123 Wed 18-Nov-15 20:17:40

Hi sorry to hear you are going through this.we had bilateral Ventriculomegaly at 20 week scan also ...17mm each side. Worsened to 20mm following week. Amino and infection screen clear. Mri at 23 weeks showed still at 20mm, caused by a blockage ...aqueductal stenosis. Scan at 25 weeks showed no improvement plus midline of brain was now missing that normally separates the 2 sides of brain. Given poor prognosis high risk of disability by 4 consultants. Decided to terminate in the end though very tough decision. It's very hard as docs cannot give you a definite outcome for the child, so all you have is probabilities based on the test results. For us it was a very tough call...this was our 6th IVF so we have longed for a child for a long time and it has not been an easy journey. X

Hopefullyhoping Wed 18-Nov-15 21:32:14

Ventriculomegaly was one of many abnormalities which it was suggested our baby girl may have. Our story was much more complicated and sadly did not have a happy outcome but we learned that scans are not an exact science and were often told one thing and then something completely different. Please feel free to message me if you would like to, I've learned a bit about scans and syndromes along the way and am happy to share

Kelsey113 Sun 24-Jul-16 08:40:05

Hi I'm 21 weeks pregnant with my second child and I have been told my son has got bilateral venticallmegally and now next week I'm going for a Fetal MRI on my 20 week scan his left was measuring at 13 mm an his right at 15.3 I don't know what to think or do has anyone been through this could the US be wrong will he live a normal life I jus don't know

LadyMumble Sat 06-Aug-16 20:52:01

He Kelsey, I just stumbled upon your post while looking for information, I am in a similar situation to you, severe ventriculomegaly at 26 weeks. I've had an amnio and MRI, all came back ok which is reassuring, but still leaves unknown factors. Such a terrible time going through those tests though, I have no answers as to what either of us can expect going forward, but I am here to handhold. Good luck with your tests.

Kelsey113 Sat 06-Aug-16 21:22:46

Hi I have had my MRI jus waiting on the results glad everything has come back ok and hope everything goes smoothly from now but yeah it is daunting as I don't know what to expect bu fingers crossed everything is all good next week when I get my results but it's the waiting good luck with you and your bundle of joy

LadyMumble Sat 06-Aug-16 22:15:31

Hoping for the best for you. I've been advised that the measurements can change throughout gestation, so with a bit of luck the fluid levels could reduce to within 'normal' range. If the fluid reading is an isolated risk factor then the odds are in our favour that there will be no adverse effects to baby. I am repeating these facts to myself regularly when I feel worried. You've probably been told the same but thought may be worth sharing. Hope results come through soon for you, waiting is hard.

elliejjtiny Mon 15-Aug-16 03:47:45

My 3 year old was diagnosed with severe ventriculomegaly at birth which developed into mild hydrocephalus at 5 months. He also has global development delay and cleft lip/palate. Happy to answer any questions you have.

LadyMumble Wed 24-Aug-16 20:11:20

Hi Ellie, thanks for joining us.

I have lots of consultant appointments coming up and have been told this week that baby may need to born early as fluid keeps rising. I'm quite worried now.

How were your results Kelsey?

Clair1909 Fri 14-Apr-17 08:09:52

Hi
I stumbled across this scouring the internet for answers as I'm 39 weeks today & have just found out that my baby has severe ventriculomegaly which was not present at any other scan. In fact right up until this week my pregnancy was about as low risk as it could have been. As far as anyone has seen/said there doesn't seem to be any other abnormalities but I am still waiting for blood test results to come back.
Can anyone advise on what sort of issues my child might face as the internet seems to have very limited information
Thank you

elliejjtiny Fri 05-May-17 15:07:24

Hi clair

It's difficult to say how your baby will be affected. I'm in a Facebook group for parents of children with ventriculomegaly and they are all different. My son is at the severe end, vents of 21 and 23 mm (normal is less than 10).

charlotteeexxx Sat 03-Jun-17 15:46:38

Hi,

Sorry I don't really have any advice but I am in a similar situation. I am due to give birth tomorrow and yesterday after a scan I found out my baby had fluid on her ventricles which measures 20mm on both sides.. we have been advised by doctors it is a severe case and she has a 50% chance of being severely disabled when she is born and she may not live longer than a few weeks. We have been told to prepare for the worst, I am absolutely terrified and don't know what to do and I am expecting to go into labour anytime now. Please if anyone has any advice or has been in a similar situation could you share your information? I am at such a loss with all this information so far on in my pregnancy, when I had the scan they said all her other organs and the rest of her brain has developed properly it's just the excess fluid on her brain which is the problem. Had an MRI yesterday which ruled out a bleed on her brain and a stroke in the womb, amniocentesis results due back tomorrow.

Any information would be greatly appreciated!

Thank you x

JustAMommaOf2 Sat 12-Aug-17 10:26:41

Hey ladies. I just found out yesterday at my 20 week anatomy scan ultrasound that my babies ventricles are dilated in the brain. They said they are 2cm so 20mm. I'm terrified and stumbled across this post. We don't get to meet with the specialist until Monday morning and I'm trying to stay positive but so far I've been unsuccessful. I don't know what to really think or expect at this point, just terrified.

JustAMommaOf2 Tue 15-Aug-17 13:19:24

I am currently going through the same situation and stumbled accross your post. Wondering how things turned or for your little one of you don't mind me asking

twotimestwo Tue 15-Aug-17 19:40:19

Sorry you're going through this. I posted higher on the thread. My DD is now at school and you'd never know she had ventriculomegaly. The not knowing is so hard - are you going for an MRI?

JustAMommaOf2 Tue 15-Aug-17 20:04:24

Thank you so much! It's been the hardest experience ever so far, and looks like a long road ahead. So far they didn't find anything else from the ultrasound. We are waiting on the genetic and infection results from yesterday and we are scheduled tomorrow morning for an MRI. Scared but trying to stay hopeful.

twotimestwo Wed 16-Aug-17 19:53:53

I hope the MRI went OK. When do you get the results? Stay hopefull, ventriculomegaly alone can have a good outcome. I remember being terrified looking at the black emptiness on the brain ultrasound, there seemed to be so little hope, but she really is 100% fine. Thinking of you.

JustAMommaOf2 Wed 16-Aug-17 20:54:20

MRI was pretty easy today he was cooperative and they were done in about 20-25 min. They said I should know the results in the next day or two. Hoping all went well and praying they don't find anything else! Thank you so much, waiting is just so hard.

Sharice03 Sat 09-Sep-17 08:46:01

My baby boys ventricles dialated even more in one week 10mm from 19mm to 29mm.i am absolutely terrified.

JustAMommaOf2 Sat 09-Sep-17 12:30:20

Sharice

I'm so sorry to hear that sad We had our ultrasound at 20 weeks and went back at 21 weeks to check my placenta location due to some bleeding. Our baby boys ventricles were still the same at that time but we haven't been back since. I'm terrified that they will have increased as well. We go Wednesday which will be 25 weeks 1 day. Have they found anything else wrong with your baby boy or is his isolated? I'm part of a group on Facebook and I have seen so many stories where babies ventricles have continued to increase even up to 50+ and are living happy lives! I read over these stories each day trying to keep hope!

Sharice03 Sat 09-Sep-17 17:05:42

I'm so sorry to hear about your baby boy. They did find that I had antibodies for the cmv virus, which I've never heard of before until recently when I started to do research. But the doc is saying it's unrelated. I think it is related. I did research and saw that there is a link to the two. Apparently there are two different types of cmv. One you can get while pregnant and the other you could contract and it stays in your body for years. I'm so scared. I just want my baby to be healthy. It's our first child. I want another one but I'm scared the next could have same issues too. I hope and pray our babies are ok 🙏

toiletanger Sat 09-Sep-17 17:17:40

@Sharice03 most people have antibodies to CMV it's quite rare not to (I know because I'm one of the 20% who doesn't compared to 80% who do)

Having antibodies means you've had the virus and are now immune (usually)

I don't have them therefore if I caught CMV for the first time in a pregnancy it could cause significant problems.

You do - which means you'd have to be very unlucky for it to cause significant problems. It can still cause some problems if reactivated... but much much less and far less likely

BanyanTree Sat 09-Sep-17 17:42:52

Firstly, really sorry you are going through this. I have been through it and it was one of the worst experiences of my life.

My DS no.2 was diagnosed with dilated ventricles at his 20 weeks scan. They were 11 and 12mm then. They also said he had a kidney problem. 3 weeks later they retested and they had got bigger. At 27 weeks I was seeing the Head of Fetal Medicine in the country I lived in. They were 19 and 20mm. I did an MRI and loads of tests which all came back OK, no kidney proble, just the ventricle size.

The Doctor who did my 20-week scan (not my own doctor who had to send me outside to someone with the high tech) scared the life out of me and said things and made recommendations that no doctor would get away with in this country. Luckily my 2nd opinion from the more qualified doctor was more professional and made the decision for me. It was one of those "If it were my son I would......" Those words changed my life smile

On my doctors advice I was told to deliver my DS via C Section 4 weeks early so they could get a better look as it wasn't going down. The second doctor said I was OK to deliver naturally but my own doc disagreed. By that time I was passed arguing and emotionally knackered plus my DS no.1 had a fractured scull from his natural birth so wasn't that bothered. I was told he would be taken to ICU straight away to be monitored and scanned at birth.

I was wheeled back to my room after the C section and my DH was sat there with a massive smile on his face. They had taken my DS to be scanned and the ventricles were normal size. I couldn't believe it.

For the first year I had to take him every 3 months to make sure they didn't get any bigger and around his first birthday they told me not to come back.

My DS, now 8 is a summer baby and is one of the brightest DC in his year. He is in the top set for maths.

Here is the jaw dropper though......my DB and his wife have a DS who had a similar problem. They didn't want anyone to know in case we looked at him differently. If they had shared this info I could have been saved a very, very frightening time!

I'm so sorry for what you are going through. There are tears welling up in my eyes for you. Please make sure you get at least a 2nd opinion. I know this is going to sound bonkers but a midwife said to me "What do you as a mother feel" to which I replied "I don't think there is anything wrong with my baby". She said a mothers instincts are better than a doctors diagnosis. I'm not normally woooo, but she was right.

JustAMommaOf2 Sun 10-Sep-17 01:08:20

I love hearing all of the positive stories it helps to get through each day. Most days I try to stay positive but it's definitely easier said than done! Some days I feel so confident my little boy is going to be just fine as he kicks me non stop all day and night. Other days I feel terrified and it's hard for me to get through the day. My doctors seem very positive at the moment but I haven't met with the neurosurgeon yet which seems like the scary part because I'm afraid of him not having the hope our specialist seems to have. The last 5 weeks feel like a lifetime but I pray that all this stress and worry is something that turns out to be for nothing. I am terrified going into this week praying his ventricles haven't gotten any worse. Praying for all these babies and for all of us to have the strength to get through all this stress and worry! 🙏🏻

Sharice03 Sun 10-Sep-17 06:39:33

I loved hearing everyone's experiences. It really gives me hope. I feel like my little man will be ok but the waiting game is so hard. I go back to the specialist next week. If the babys ventricles dialate anymore by next week, they may induce me early. They gave me steroids to help the babys lungs develop. I hope and pray that everything will work out.

BanyanTree Sun 10-Sep-17 07:56:38

Stay positive and please take care of yourself. Lots of rest, good food and de-strressing. When I gave birth I was 2kg lighter due to stress than when I got pregnant. Not good!

I'm pretty sure it will be OK. You need to look after yourself so when your baby arrives and they are OK, you will have the strength to enjoy all the mummy and baby things you want to do.

Lots and lots of love and positive energy from me to you XXXX

Sharice03 Sun 10-Sep-17 08:56:52

@banyantree, thank you, I will do 😊.

Sharice03 Sun 10-Sep-17 09:01:01

@toiletanger thank you for the info. I hope my cmv didn't somehow reactivate and cause harm to my little man. I'll definitely keep everyone posted on my progress. Thanks everyone for all of the encouraging words.

LadyMumble Sun 10-Sep-17 11:31:45

From the bottom of my heart I wish you and your baby health and happiness. The positive stories on this board are encouraging, and the advice to take care of yourself, to make sure you eat properly and rest enough in this stressful time is so important.

I commented further upthread when I was going through similar to you. My ending isn't as positive as others you have heard. My beautiful baby's ventricles continued to dilate. There was much medical intervention in my pregnancy, my outcome was being advised to have a termination for medical reasons late in my third trimester.

The severe ventriculomegaly was classed as isolated throughout my pregnancy, yet other brain disorders were found at post mortem. No explanation for this has been found despite extensive investigation. My other child has not had this or any other significant health problem in infancy.

I'm sorry to share a less positive story. I feel it's important to be honest, although returning to this thread has been hard. There is such little information around. All anyone in this situation wants to hear is that everything will be ok and your much loved and wanted baby will live a healthy life with you. I sincerely hope that this is the case in your situation.

Sharice03 Sun 10-Sep-17 12:19:25

@ladymumble I'm so sorry to hear that you didn't have a favorable outcome 😯🙁. You are a very strong person to share your experience with all of us. We need to hear both sides of the effects of this terrible disorder in order to prepare ourselves for whatever outcome may come. My prayers are with you and anyone who has had to go through such a horrific experience. No one should go through the pain. Pregnancy is supposed to be a very happy occasion. I had never heard about such a condition until I was in this situation and the doctor immediately told my husband and I that our baby could have mild to severe disabilities and that a lot of people consider termination or adoption. We were both devastated.

Iamchanging Mon 18-Sep-17 08:11:27

Hi all, do you mind if I join as this seems to be so rare I feel utterly alone. At my anomaly scan on Friday my little girl was found to have enlarged vents of 12.5mm. Next step is consultants on Thursday, the waiting game begins. My thoughts go out to all of us in this position, especially ladymumble at the moment x

Laura12358 Mon 26-Feb-18 08:19:22

Hi everyone i had my 20 week scan last thursday and have been told my little girl has ventricularmegaly and is 23 mm both sides of her brain. We are having a MRI scan friday and im so worried the healthcare professions are explaining how bad this is but have read so many possitive things on here and dno wat to think would appreciate it if anyone could share their experiences x

iamloading Wed 28-Feb-18 18:51:51

Hi @Laura12358. I'm here if you want to talk. Unfortunately I didn't have a happy ending but I'm here to hold your hand. Have you got an MRI scan booked in? If not I'd really recommend that you push for one. Huge hugs x

iamloading Wed 28-Feb-18 18:53:35

I'm so sorry, just re -read your post and realised you are having an MRI. That's good, at mine they gave us an overview straight after which was really helpful. Unfortunately my little girls was very progressive and just got worse over the following weeks, but I pray your little ones vents go down x

veronicalynn Fri 16-Mar-18 18:14:36

Hi. I'm new here. Just received a terrible diagnosis at my 31 week level 2 scan. Baby girl has bilateral ventriculomegaly, 20mm and 21mm. As far as they can tell everything else is there and brain is measuring the right size. My 20 week level 2 scan was fine. I don't understand how this was caught this late. I have an MRI scheduled for Tuesday and the Neurosurgeon will go over the results then. I'm so scared! I found this forum as well as others that have given me hope.

iamloading Fri 16-Mar-18 18:25:35

Hi @veronicalynn I'm here and my heart goes out to you. I went through this in October 2017 and it's just hell. My little girls vents were 18mm at 26 weeks - sadly VM can develop at any point during the pregnancy. I'm here if you need to talk. There is also a fantastic and active Facebook group if you want positive stories, unfortunately mine didn't end so well x

veronicalynn Fri 16-Mar-18 18:31:59

@iamloading Thank you! I just joined one on fb. I'm hoping the measurements were wrong because baby is so low in pelvis and it looked like they were having a difficult time getting a measurement.

iamloading Fri 16-Mar-18 22:24:30

@veronicalynn when is your MRI. They were so good at mine and showed us the images straight after, and the detail they could see was incredible.
I hoped it was a mistake with my daughters - but whilst they can be a few mm out either way once you are into the severe category (16 +) unfortunately it is almost impossible to be a mistake. I hope you don't mind me saying that, but I would rather be honest with you as I think I went through the same hope process as you are x

iamloading Fri 16-Mar-18 22:31:44

Sorry I've just reread your post and seen that it's on Tuesday. Where abouts is it? Mine was Sheffield

veronicalynn Sat 17-Mar-18 02:16:28

I live in the U.S. Going to a place in Miami Florida.

iamloading Tue 20-Mar-18 06:44:02

Good luck for today x

MrsStarwars Wed 21-Mar-18 08:34:12

Good luck for your mri today.
I have twins (now almost 10 years old). At my 20 week scan with them, dr found ventricles dilated to around 20mm. I had many scans plus an mri which confirmed this, all other brain structure normal.
Fast forward to their birth, they were born at 37 weeks, both boys were scanned the next day and ventricles appeared normal size. We went back at 6 weeks and at 1year and everything was normal.
Just wanted to share positive story with you.

veronicalynn Wed 21-Mar-18 09:39:46

Thank you!!! We got good news yesterday! Neurosurgeon is not concerned with my baby's ventricle measurement at this stage because her head circumference and other brain matter look fine at this point. We just need to monitor her head circumference during and after birth. So relieved!!!! The Perinatal Dr that found it apparently isn't educated enough on it that ventricle measurements aren't the only thing to look for and had me worried for a week. I'm switching Dr's.

veronicalynn Wed 21-Mar-18 09:41:19

Thank you! Glad your twins were ok!! I just posted my results above. We will just monitor her at this point.

iamloading Wed 21-Mar-18 20:33:04

So glad to hear that!!

MrsStarwars Thu 22-Mar-18 08:01:05

Sounds positive, hopefully you can relax now and enjoy the rest of your pregnancy. All the best.

veronicalynn Sat 24-Mar-18 18:15:05

Update: Got MRI report back that said- absence of the cavum septum pellucidum and corpus callosum. Moderate to marked colpochephalic configuration of the ventricle. The neurosurgeon said everything looked normal and just to check for head measurements. So now why is the MRI report saying differently? The report was not ready when neurosurgeon reviewed the MRI images. Not sure who to believe! Meeting with perinatal dr Monday. Neuro's notes on report did say 'low visibility of corpus callosum.' So maybe just hard to see? I would like to believe the neurosurgeon over the radiologist who wrote the report but it's still worrisome.

iamloading Sat 24-Mar-18 20:45:08

Hi @veronicalynn. I'm so sorry to hear this, it's pretty much exactly what happened to us except we were lucky that they reviewed the MRI results straight after our scan so there was no waiting. The MRI is as accurate as you can get, in my opinion and experience the neurosurgeon was incredibly wrong to not have reviewed the MRI first.
It is very rare that severe ventriculomegaly is isolated, and that's what your baby and mine have. I was utterly gobsmacked by your first update, and sever VM should not be taken lightly. I would recommend that you read up the systematic reviews available on the internet, I found them more informative and helpful than the doctors. Frankly this is so rare that by the end I knew far more than them.
What you can't know of course is the outcome. Honestly it can vary from anything from severe disabilities to a normal baby - no doctor can tell you that, it's just wait and hope. I'm here if you need to talk x

iamloading Sat 24-Mar-18 20:47:24

*reviewed the MRI report first

veronicalynn Sun 25-Mar-18 00:31:10

Neurosurgeon reviewed the MRI images right after, but not the report from the radiologist. That wasn't available until a few days later.

MrsStarwars Mon 26-Mar-18 21:48:25

Sorry to hear your update. Not the news you were hoping for at all.
There is always hope though, as the previous poster has said the spectrum of of possible outcomes is huge and not easy to predict.

gabriella1982 Wed 28-Mar-18 19:54:51

Hello Mums. Sorry in advance about eventual mistakes in my English, I'm from Hungary. Since the last days of february, I'm searching for answers, info, data, personal experiences, forums...desperately. I'm expecting my second baby boy, and at the 19 wk anatomy scan my doctor found unilateral borderline ventriculomegaly of 9,5mm, said not to worry much as it is high end of normal range, but immediately sent me for level 2 scan in another city's bigger hospital. There the measurement was confirmed 10mm, mild vm. I had torch test and amnio on the spot, and went back to control 2 weeks later. The results came back negative, the left ventricle was 11mm. Now this week, in my 23, they measured 10mm - I thought wow my prayers were heared, as I've cried every day - BUT now both lateral ventricles are involved, so diagnose is mild bilateral vm now. Devastated. So this means it was not decreasing, but got somehow equal in size, with one size increasing 5mm within such a short time. I am very worried, because in my country it is not general to make fetal MRI. (yes, we're in some way back in the 19th century). And genetic counseling means someone tells you: Yes this is a problem, don't know small or huge, let's see next time. That's all. No surveys, no statistics, no case studies available. 😞 please help me with your experiences.

iamloading Wed 28-Mar-18 20:29:59

Hi Gabriella. I'm sorry that you are going through such a hard time. The great news is that with mild ventriculomegaly like your baby, the chance of it having no impact is 97% according to a number of different studies. It sounds like it isn't progressive which is great. So whilst it must be such a stressful time for you there is so much hope x

iamloading Wed 28-Mar-18 20:32:31

Ps there is no difference in outcomes between bilateral or unilateral in the main so long as it continues to be mild x

iamloading Wed 28-Mar-18 20:39:44

https://obgyn.onlinelibrary.wiley.com/doi/abs/10.1002/uog.13364

This is a great read

gabriella1982 Thu 29-Mar-18 07:06:16

Thank you very much for your kind answer and support! And also for the useful read. Now I know much more about our situation. I was so afraid, that bilateral form is much more serious. And I am still afraid that despite the numerous u/s and after all the other antenatal tests, they miss the reason causing it because of not making fetal MRI. So after birth they will tell us isolated vm is misdiagnose. My other fear- can stabile vm turn into progressive later in the pregnancy?

iamloading Mon 02-Apr-18 18:18:39

Sorry I missed your reply. Yes stable can turn progressive but it is very unusual from what I have read x

gabriella1982 Mon 02-Apr-18 19:52:57

So it can turn so...😞 into several vm or hydrocephalus. Oh gosh. My next u/s follow up is on Thursday, and I have so much fear. Anyway thank you for the answers!!!

iamloading Mon 02-Apr-18 20:10:37

I will be thinking of you x

gabriella1982 Fri 06-Apr-18 16:40:24

@iamloading Thank you for thinking of me! Yesterday I had my next follow up ultrasound, and fortunately it has not turned into progressive yet, in fact, still stable 11mm. Now the next u/s will be 6 weeks later, I will be 31 weeks by then. An eternity 😞

Sonalslc Wed 11-Jul-18 05:47:15

@veronicalynn I am in same boat 22 weeks scan was ok but at 33 weeks baby's vent sized 14 and 20 mm. Just curious about how did it go for you? How's your little one doing?did she have shunt?

veronicalynn Wed 11-Jul-18 06:14:46

My daughter is 2 months old doing great so far! She was diagnosed as missing part of her corpus callosum which is why the large vents. No pressure, so she has not needed a shunt. We are monitoring her head size though just incase. There are Facebook groups for hydro, ventriculomegaly and corpus callosum. I've found those groups very helpful. I'm sure you're going through a rollercoaster of emotions right now. I would join those groups. The dr's tell you worst case scenario and scare the crap out of you! Some kids are affected by the large vents, others are not. It all depends on what else is going on (if there are other brain abnormalities, pressure, etc.). Good luck and congrats on your pregnancy!

Sonalslc Wed 11-Jul-18 06:38:30

Thank you for quick reply. My LO has no issue with other parts of his brain. It is left ventricle which is 20mm I am concerned about. Yes you are right that Dr scared me a lot. I have joined few groups on Facebook. I will post my updates soon. Thanks once again for quick reply. I am so glad that your little one is doing great

MrsE114 Fri 10-Aug-18 11:28:15

Hello,

Had 20 week scan yesterday, having a baby girl.

Everything ok on scan apart from VP enlarged and measuring 12.2mm. We are to be re scanned on Thursday and are so so worried.

Hoping to read some positive stories xx

iamloading Fri 10-Aug-18 13:22:40

Hi @MrsE114 I've been Weber you are and my heart goes out to you. Not a positive story from my side I'm afraid but happy to answer any questions that you might have x

MrsE114 Fri 10-Aug-18 17:37:00

Thanks for replying iamloading. Do you mind me asking what your experience involved? Thanks

iamloading Sat 11-Aug-18 08:55:30

Hi @MrsE114 I'm just wary of scaring you as we had bad luck followed my more bad luck, so I really hope that yours won't go the same way.
Essentially her vents were 13.5 at the 20 week scan. These were then put at 12.5 at a scan at the specialist unit a week later. A week after that we had an MRI to see if it was isolated. Essentially 12.5 isn't the end of the world but you want it to be isolated and non progressive. Statistically that is also by far the most likely outcome, and vents of under 12 have a 96% chance of having a "normal" baby with no disabilities.
The MRI showed that it was isolated (great) but had jumped up to 16mm. Dreadful progression in a week.
Anyway a week after that we had another scan and they were now 18 and there was barely any brain visible - just this horrific mass of fluid. We were told with the rate of progression that she had very little chance of any quality of life.
At 25 weeks we took the horrendous decision to TMFR and I gave birth to her 4 days later. Without doubt the worst time of my life but like I say we constantly were the bad end of the statistics. It's only something like 12% of cases that progress like ours. Most stay stable or even correct themselves.
Luckily the post mortem showed no genetic cause and I am now 37 weeks pregnant again with our little rainbow.
Here if you have any questions as I think I read every medical document going during those awful weeks. Please push for an MRI scan as it is by far the most accurate and detailed way to assess your baby x

Molliejx Fri 11-Jan-19 20:46:02

I've had my 20w scan and found my little girl has severe Ventriculomegaly. Been told maximum fluid in brain should be 15mm. One side is 16.5 and the other is 22.5. The midline of the brain tissue has also gone due to pressure from the fluid, so the brain is not separated into two anymore and the outside of the brain tissue is very thin. We've been advised to terminate but its easier said than done!
Still in such shock and devastation to why this is happening to my baby girl. Please can someone give their experience?
Anything would be appreciated right now!

39Suzy Sat 12-Jan-19 08:57:54

@molliejx i had to terminate in April at 24 weeks due to a brain abnormality. It was different to your diagnosis but ultimately following MRI, post mortem and full (clear) karoytype we knew we did the right thing. The brain is a complicated structure and unfortunately doesnt magically get better. If you have been advised to terminate (as was i) the experts will be advising this with the best intentions.

I can't give you any advice but i can share that although it was the hardest and most heart breaking decision we have ever made, we know we did the right thing to save our beautiful boy from pain and suffering.

Please DM me if you need to chat and wish you lots of love and strength for the days and weeks ahead x

iamloading Sat 12-Jan-19 15:27:11

Hi @Molliejx We had exactly the same as you. The vents shouldn't be any bigger than 8mm, over 15mm is classed as severe with a very poor prognosis. You can read about my experience on this thread, my daughters vents were 18/19. Have you had an MRI yet? Feel free to message me if you want any advice or me to share more of my experience. I'm so sorry for what you are going through

Molliejx Sat 12-Jan-19 16:49:12

@iamloading
Thank you for your reply. I have read your story and I am so sorry to hear you had all of that!
The specialist has said due to pressure, the midline of the brain tissue has gone and the outsides of the brain tissue is getting thin also.
I feel like terminating would be the best route to take as i would hate for our little girl to go through any suffering. Its just such a final decision and although you hope for your 9 months pregnancy to go fast, i just want it to slow down so we could see what could happen in the future for her. Its so heart breaking.

iamloading Sat 12-Jan-19 17:17:30

@Molliejx It's a hellish decision to make. Having read a crazy amount of scientific papers my husband and I decided that we would terminate if her vents went over 18. They were 16 when we said that and at the scan the following week they had jumped again to 18/19. At this level as I'm sure you have been told there will be little brain function with cluster seizures, difficulty feeding etc. We just didn't want that for our little girl and it felt like the least cruel option for us rather than bring her into the world like that. But we kept just thinking one more week, one more week. Especially when I could feel her kicking around in there.
It's desperately hard and cruel, and I'm so sorry that you are having to make such an impossible decision. Over a year down the line I still feel like we made the right decision but it will haunt me forever

Molliejx Sat 12-Jan-19 17:33:18

@iamloading
Yeah with one side being 16mm and the other 22mm, and with the loss of brain tissue, i feel like there's no coming back from that for her. It's just so cruel that this can happen. I bled every few weeks from 4-16w with going to do many scans and being so relieved when her heart was beating. Nothing else was picked up. And then 20w scan comes,no bleeding to worry about, we're excited to see our little girl, heart beating strong, and then the awful news which makes you feel so numb and knowing a tough road is ahead. I just feel so sorry for her and the thought we won't be bringing her home just devastates me so much. My OH doesn't get upset very often, twice in the last 9 years I've seen him cry and he is just beside himself and it really has shaken us. My one fear is that when they do the PM, that they'll find no issues. I know with the tissue missing then that can't repair itself but its a massive fear that it was all wrong.
I'm so happy for you to be able to have a healthy pregnancy afterwards and I'm praying this feeling isn't like this forever. Or little girl was wanted and loved from day one. Its just so horrible.

iamloading Sat 12-Jan-19 18:11:39

@Molliejx I had exactly the same fear about the post mortem. Also my husband was exactly the same, in fact it hit him hardest I think of the two of us. He still cries fairly frequently about it now. Going back to the post mortem fear, we could see the second I gave birth to Beth that something was badly wrong. Her head was just too large and was the shape of a football. In a strange way I was glad as it confirmed that we really had made the right decision. I knew we had, but it helped with the guilt to see it so clearly. We also spent time cuddling her which I wasn't sure if I wanted to before but now I'm so so pleased that I did.
How many weeks are you? If you are past 24 you are entitled to full maternity leave which I needed to heal. Thinking of you xx

Molliejx Sat 12-Jan-19 18:58:54

@iamloading
The reports say that the body is at 6% and the head is 86%. So that's a massive difference in size. So I really do think it would be on the severe case of it for her and would be heartbreaking to watch her suffer if we were to continue the pregnancy, if she would even make it that far in not sure.
It really does hit the dads and he says its the right of my bringing her home and making memories and watching her grow up. It kills me seeing him this way.
Yeah its guilt that im scared of too. Like I'm grieving for her and she's still with us. And its the unknown and the fear of the post mortem.
Im 20w+3d today. I thought about waiting until 24w for registering purposes but i really don't feel like i can go through the next few weeks with the movements as its devastating to think of what's to come. I don't get sick pay with my job either in healthcare so ever having 2 weeks off is going to be a push for me.
Thank you so much, you've really eased my mind in that we're not alone xxx

iamloading Sat 12-Jan-19 19:28:42

@Molliejx gosh that's so hard for you. I ended up booking a holiday just to have something to focus on and a memory that wasn't connected to her. I agree if you are at that gestation. Past 24 weeks it is also much more of an intrusive process as they have to inject the baby to stop the heart which frankly makes a horrific situation even worse.
I'll be thinking of you and here if you have any questions or just to talk. It sounds like sadly like Beth you will be able to see her condition when she is born, which then for us were backed up by the PM. The guilt will be always with you, but you will know in your heart of hearts it was the right decision for you as a family. I'm so sorry xx

Molliejx Sat 12-Jan-19 19:40:50

@iamloading
Yeah my partner wants to do something to kind of not be connected to her. To be due end of May, i don't want to be alone on her due date and feel I would need to do something you know.
Yeah my partner doesn't want to see me go through the process of terminating at 24w. It's very intrusive and I'm so sorry you had to go through that. And i think prolonging it, prolongs the grief and everything as well. So we have our appointment monday to discuss what would happen exactly in termination and if we want to start the process then. You just never think it's going to happen to you. Thank you for your words, you've honestly helped and I can't be more grateful xxx

39Suzy Sun 13-Jan-19 13:53:49

The feticide (injection into the heart) is generally done after 20 weeks as if the baby is born alive, they have a duty if care to preserve life. Wishing you strength and love for tomorrow @molliejx xxx

Molliejx Sun 13-Jan-19 16:45:39

@39Suzy
They've said that up to 21w6d, they do the tablets only and after that is when they do the injection so I'll double check that with them tomorrow.
Thank you so much xxx

iamloading Tue 15-Jan-19 16:41:09

Thinking of you @Molliejx

elliejjtiny Tue 22-Jan-19 19:37:46

So sorry to those of you who have lost babies due to ventriculomegaly. My baby was diagnosed at birth with ventricles of 21 and 24mm, part of his corpus collosum missing and his brain was also too smooth for his gestation (the brain is meant to get more wrinkled as it matures). He is now 5 years old. He had a difficult first few years with a lot of operations and pain but he has been happy and stable for nearly a year now. He has some learning difficulties but he is thriving in mainstream school. I hope my positive story doesn't upset anyone. I know I am very lucky to have him.

Molliejx Sat 02-Feb-19 11:07:11

@iamloading @39suzy
Thank you again for your support and advice over the last couple of weeks. I thought I'd update you on what's happened since everything.
After 33 hours of labour, on the 17th January 22:07, Erin Norah Steel was born sleeping. She looked so peaceful, every part of her so defined and perfect. Couldn't believe how we made such a beautiful baby. We held her, kissed her and said what we wanted to say but not being and to bring her home was horrible, we just can't describe the ache we have for her. Shes having a post mortem now over the next few weeks and we'll get the results in just over 2 months. We're going to plan her cremation ourselves as we had some info that we didn't like - they don't tell you when they cremate your baby with the hospital until its already done. Personally i find that disgusting. They're our babies yet we don't know even a day that its happening, not until it's already done. I was devastated hearing that. So now we are to arrange it ourselves which I am dreading but id do anything for my little girl.
In memory of Erin, we had her tiny footprints tattooed with her name and i can't stop looking at it, as well as looking at the photos we took of her.
Im having another week off work, but then going back on the 11th. I feel like i will never be ready for that but I know i need to go back at the same time.
Thank you again for your support and advice, hearing other stories helped me to process what was going on, im so grateful.
I attached a photo of our little girls footprints on my arm, where i can see them all the time ❤️

39Suzy Sat 02-Feb-19 15:03:23

@molliejx
Lovely to hear from you.
Congratulations on your little girl,.what a beautiful name. I am sure she would be so proud of you both ❤

Leaving hospital clutching my memory box was the hardest thing i have ever done, i feel your pain.

Hope the PM gives you some answers and that Erin's funeral brings you peace and comfort. Xx

iamloading Sun 03-Feb-19 12:29:10

@Molliejx thank you so much for coming back and updating, I've been thinking about you. The little footprints are just lovely, we have a frame up with Beth's in our kitchen which I look at every day. Sending you huge hugs and I'll have everything crossed for your PM results. Ours took about 2 months. We also organised the funeral ourselves x

charlotteeexxx Mon 28-Oct-19 16:08:02

Hi all.

Not sure if this helps any of you but I posted a couple of years ago just days before my daughter was born and she was diagnosed with severe ventricularmegaly. We were told to consider termination as the measurements of 21mm and 22mm meant there would be a good chance she would be severely disabled and have no quality of life. I am now here with a beautiful and healthy 2 year old who is very advanced and proved everyone wrong! I also have a 4 month old little girl who is loved so much by her big sister! She was discharged from the hospital at 18 months old!

Just wanted to share a bit of a positive story with you all as we had a horrible experience when we found out about it and now we have a perfectly healthy and happy little girl!

rjm4 Thu 07-Nov-19 03:34:11

@charlotteeexxx can you tell me more about your pregnancy? My DS was diagnosed with severe venticulomegaly at our 20 week scan with ventricles measuring 20mm and 21mm. Did yours get worse through the pregnancy or stay the same? Did the Drs recommend anything to you? Or just say wait it out?

charlotteeexxx Fri 08-Nov-19 11:09:55

Hey, everything was absolutley fine at my 20 week scan. The only reason I found out was because I went into hospital for reduced movements 2 days before giving birth and that's when they spotted it. They sent me straight up to LGI and did an amniocentesis and that's when they advised to terminate as the risks of her being poorly were so high. We actually thought about it for a second but because I was already at 40 weeks I decided against it. In the end from the MRI they said that she has a bleed on her brain which was blocking the fluid leading to the ventricles being enlarged. As soon as she was born she had another MRI and the ventricles had reduced and they just said it rectified itself.

I'm so sorry to hear that, I really do feel for you it's a horrible experience to go through! What did they advise you, the drs?

I really hope everything is okay x

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