Anyone had a Foetal MRI? Brain Abnormality questions

[GanderGoose]

Hello, I'm new here. I'm pregnant with my second child and our 20 week scan seems to have highlighted some potentially severe brain abnormalities. We have an appointment at QMC at Nottingham on Friday and will then await an MRI.

Can anyone tell me of their experience of what a foetal MRI is like?

Has anyone had a diagnosis of a child without a cerebellum? Is it possible that the child could survive? I'm assuming not.

Thanks in advance.

[twotimestwo]

Sorry to hear you're in this situation. I had a foetal MRI after a diagnosis of severe ventriculomegaly (fluid on the brain) at 20 weeks. The MRI took about 20 minutes and was noisy and uncomfortable as you have to lie flat on your back, the results took 2 weeks, and the waiting is dreadful, for us the results confirmed the ultrasound results and we were told that there was too much fluid, very little cerebral cortex and the sulcation (folding) in the brain was delayed. We were given a very high probability of severe disability. Our DD is now 16 months, walking and has been discharged from paediatric neurology, so miracles can happen. I hope they do for you as well.

[GanderGoose]

Thanks so much for replying. I appreciate it. Did you feel really claustrophobic? Man a two week wait will be awful. We don't actually know if we'll get the MRI on Friday or not. I guess I'd better be prepared for it not happening.

Thanks x

[mb2512cat]

I've had two foetal mris, both for my third pg. if you've never had an MRI before, you go into a metal tube which can be quite claustrophobic and it's very loud, though you are given ear defenders, which they can speak to you through-you may get a choice of music too. I had to take diazepam both times too as they needed the baby to be still. For us, the results were quick, probably in the next day or two. It was our second pg to go wrong, with different brain abnormalities each time, and unfortunately we didn't get a good outcome (ultimately the abnormalities were being caused by an unbalanced chromosomal translocation). Anyway, all in all, in terms of the tests/procedures they can do you on, it's at the 'more pleasant' end of the scale (compared to giving birth for instance!)

[twotimestwo]

I would definitely expect not to get it on friday. We were referred to kings from our local hospital and basically had a more in-depth repeat of the 20 week scan and then had to go back to the imaging department for the MRI a couple of days later. I think they can get results more quickly, they knew we had decided to continue with the pregnancy though, so didn't see the rush, I was petrified they'd find even more wrong though. I didn't feel claustrophobic, just closed my eyes. I did get really lightheaded though and had to call to them over the intercom as was going to faint, they were there in seconds though and really nice about it. Good luck, I'll be thinking of you on friday.

[GanderGoose]

Thank you both of you for your replies. Such a shame that they made you wait as you'd already decided to go ahead with the pregnancy, I may keep that piece of information to ourselves then unless specifically asked. Obviously we can't make a decision until we know all the details but I think we are more likely to keep going with the pregnancy than not.
Thanks for your advice. I'll try to remember to come back and update you. x

[twotimestwo]

Please do try and come back. At my local hospital I found a real lack of support in continuing the pregnancy, I think they thought I was insane, which is pretty hard when you're already grieving for the child you thought you'd have and scared of life ahead. So I hope you get better support. It's a difficult decision though and i'd never condemn anyone for deciding on the other path.

[GanderGoose]

Well I have to say that I am so impressed with the care we received at QMC today. We saw the consultant and had a detailed U/S in which we were told that they were looking for confirmation of Spina Bifida. They couldn't see what they wanted to managed to send us down for the MRI straight away. Thankfully my head didn't go into the scanner completely and I could crane my neck a bit to keep looking at the ceiling! Amazingly the Radiologist was able to give us a brief report today too. We were told that the baby has a Pseudo-Encephalocele as there is still some bone although very thin covering the baby's bulging brain.

We have chosen to continue with the pregnancy and they are fully supportive of that. I'll have to have a C-Section (I really wanted to avoid that.) and they'll try to get the baby as near to 38-39 weeks as possible before delivery but it depends on baby's health and head size/shape. We're waiting to see the Paed neurosurgeon next week to discuss surgical options once she is born.

Thanks for your help.

[twotimestwo]

Really pleased to hear the team are being supportive. I recommend the charity shine (www.shinecharity.org.uk) really good info and support for spina bifida and hydrocephalus, which is now my DDs diagnosis. The c-sec and having your baby in nicu after birth are not pleasant experiences, particularly as the first few days you will be reliant on other people to take you to see your daughter, but I hope she will not have to stay in too long and wish your family the best for the future.

[twintwo]

I was also under the care of FMC at queens and found them to be excellent. I have twins who were diagnosed with severe ventriculomegaly and missing corpus collosum. After MRI at queens they found only moderate ventriclomegaly and that the twins brains were normal. After they were born ultrasound showed only mild ventriclomegaly and the children are now happy healthy 4 year olds. I'm sorry to hear your baby's diagnosis, but try to keep positive and hold onto the hope that things may not turn out as difficult as you fear at the moment.