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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?"

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!!

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