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Ventriculomegaly

(5 Posts)
ScarlettB18 Thu 25-Aug-16 18:40:09

Hi everyone,

I wanted to post on here to see if anyone else has had similar problems and could help me gain some incite and I also just wanted to put my story so far out there as I know there isn't much information out there on ventriculomegaly so hopefully I may be able to help someone else.

sorry for the long post but I want to put as much info out there as possible.

I am 18 years old my partner is 24 I am currently 21weeks and 4 days into my pregnancy.

I went to my 20 week scan and was told that a ventricle on our babies brain was measuring. 10.2mm and this was classed as mild ventriculomegaly. Because of this I was booked in for a level 2 scan at the fetal medicine unit. After receiving this news from my 20 week scan I was not worried initially as my mum and partner both said it is probably a precaution and nothing to worry about. However curiosity got the better of me and I began to Google ventriculomegaly whilst I was waiting to go for my level 2 scan. Needless to say what I saw scared the sh*t out of me and I cried non stop for days and had 2 days off work whilst I waited for the level 2 scan.

Yesterday I had my level 2 scan and was told that the ventricle in the babies brain were measuring 11mm. I was told that the causes for ventriculomegaly could be due to infection or a chromosome defect and was therefore offered a blood test and amniocentesis to see if this was the case.

After the scan I was taken to a side room and told to wait whilst a midwife came to talk to me about an amino. I already had read about amino and was very scared to get it, I was in bits and completely distraught. The midwife came back and told me about amino, I was not in the right mind set to go through with the amino there and then so I decided to take the info the midwife gave me, go home and call them back with a decision. However I did do a blood test to check for infections.

Today (a day after my level 2 scan) I called the hospital and decided to go through with the amino. The reason why I want to have the amino is because I would like to be as prepared as possible and try and get some clarification as to how my baby will be born if I choose to continue with the pregnancy. My amino is booked for next Wednesday which means 6 days of waiting. Also when I rang the hospital today the blood test results came back and were negative which is positive.

Right now me and my partner are weighing up all of our options and trying to decide what is best for both the baby and ourselves. We realise that even if the amino results come back negative, the brain fluid in the babies brain could increase and we could therefore still have a child who suffers from mild to severe disabilities. There is nothing doctors can do whilst the baby is inside of me and they can only 'predict' outcomes for the baby based on the amino and further scans measuring the brain fluid.

I am at a loss, this baby was not planned I am only 18 and left school less than a year ago, I haven't even had a driving test yet, went on holiday on my own and have only just moved into my own place and started paying bills in the last 6 months. I know that if I had an abortion I could get contraception and get driving, go to university and keep my job and make it into a career and 'try' to start again.

However I have felt this baby move, I know he is a boy, I have seen his little arms and legs kicking and heard his heart beating. He is a life, a human being with the potential to be born and be somebody.

I'm so scared for my baby, myself and my partner. I never expected at 18+24 years old, healthy, not overweight and no family history of problems that me and my partner would have a baby who wasn't completely 'normal'.

I do not want to give birth to a baby and then have nothing to care for or love, I lost my dad when I was 13 which completely changed my life, I am still copping with that even 5 years later and I honestly do not believe I can mentally take any more loss in my life. I have suffered from depression and anxiety (due to the death of my dad) for the past 5 years. I got good grades, a good job, the chance to go to university, a nice boyfriend and a home together with my partner, I felt as if my depression and anxiety was getting so much better I had never been happier. when I found out I was pregnant I was so so scared but also so happy because I wanted this baby. Now after hearing the news that my baby my suffer, I may suffer and my partner may suffer, I am distraught and feel as though depression and anxiety are very quickly becoming a large part of my life again.

So sorry for the long post, this is probably more of a rant to get things off my chest than anything else, but I would like to hear anyone else's experiences or opinions on this.

BuzzyBee83 Thu 25-Aug-16 22:42:02

It is an awful thing to have this extra worry, but just to share my experience, we had a very similar measurement at our 20 week scan -just over 10mm. At our next scan it had gone up to 12mm so we had a fetal MRI which looked fine and sure enough, by the scan at 36 weeks the fluid had gone down to "normal" measurements. Our little boy has just turned two and is absolutely fine-no problems at all. They scanned his head by ultrasound after he was born just as a precaution and his brain was pronounced to be "very normal"! When we saw the consultant at 20 weeks I was in bits too and found they weren't very reassuring taking about possible infections and chromosomal problems, but speaking to the specialist at the MRI we had, he said that 9 times out of 10 the measurements in these mild cases go down before the baby is even born - they are fluctuating all the time. It is also a relatively new thing they measure, so for example when we were born such things weren't even checked - we could all have slightly larger ventricles than average and wouldn't even know! Also 10mm is the current cut off for "normal" so at 11mm your baby is only 1mm away from it not being flagged up to you at all -and measuring on an ultrasound is tricky anyway! I'll keep everything crossed for you - and do try and stay away from Google - it is full of horror stories! I hope this helps a little - happy to answer any questions if it helps.

ScarlettB18 Fri 26-Aug-16 08:29:25

Thank you so much for replying, it feels so good knowing that this situation isn't all doom and gloom and that there could be a positive outcome. I wish you all the best with your baby and thank you again xx

BuzzyBee83 Fri 26-Aug-16 13:32:56

No problem at all - the odds really are stacked in your favour that there is absolutely nothing wrong at all! I do hope everything goes well for your amnio and future scans - our measurement did go up to just under 13mm at one point (causing me to panic!) but then went down to 8mm. It is worth asking about the possibility of an MRI when you next see your consultant - they can see so much more detail than on the ultrasound and can confirm all the structures of the brain are present. I found I finally stopped worrying after this (28 weeks), even though the ventricle measurement hadn't actually gone down below 10 yet. Best of luck!

elliejjtiny Fri 26-Aug-16 18:52:26

My 3 year old has mild hydrocephalus which started out as severe ventriculomegaly. His wasn't picked up until the newborn check that the paediatrician does so we didn't have the worries in pregnancy like you. I'm in a Facebook group for children who have ventriculomegaly and most of the children are doing very well with no problems at all. My son has delays as do a couple of others with severe ventriculomegaly. Please ask if you have any questions.

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