Hi there everyone,
I'm having an MRI scan at the Royal London - hopefully on Monday, although I've been warned the date could be changed. To recap my story I'm 24 + 4 and despite an uneventful pregnancy so far, this past Monday it was found on a regular private scan that my baby has a 'septated cystic mass' attached to the back of her tongue measuring 14.5mm x 14.5mm.
The initial diagnosis is either a few different types of rare tumour or more hopefully a type of cyst. Whatever it is, is extremely rare and I've been told by two consultants that they have never personally come across anything like it before. From scouring Google it seems there are a few cases in journals which have positive outcomes, and a few which do not. I'm trying to be half hopeful for now, but so far they cannot (will not) say whether or not this will be fatal until they know more. The best case scenario is that it's a cyst can be drained, and that it won't grow large enough to obstruct her airway.
Has anyone ever had an fetal MRI scan? And what are they like? I've never felt I was particularly claustrophobic but the thought of being in a small tube is a bit daunting. Also how long do they last?
Any advice appreciated!
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Antenatal tests
Fetal abnormality and MRI scan?
Happy8714 · 23/01/2014 15:28
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Hey all and thank you for your support (and for the PM's Saggy).
I've had an absolutely horrible few days - the worst of my life. I spent most of the time furiously Googling medical journals to compare what has been written in my notes to what's 'out there', which brought me no further to a definitive answer.
It is either a type of oral teratoma (very rare) or a glossal cyst (more common in children and adults, but still extremely rare in unborn babies). It's avascular (little to no blood flow) which is good, but is septated (divided by multiple cysts) which is less good and glossal cysts are not usually septated. And it was still relatively small at the time of diagnosis (1.45cm) and not taking up her airway as of yet, but that could change in the next 10-12 weeks seeing how quickly it has appeared (just over 3 weeks if it really wasn't there at my 20 week scan) - but hopefully not.
With all of the unknowns and uncertainty of how my pregnancy and birth will play out I've gone though periods of virtually mourning a baby who is currently alive and kicking away furiously (probably in anger at her silly mother 
). I know it's morbid as anything but I feel that I have to brace myself for the worst. But at the same time the worst is not something I want to ever deal with. It's a bit of a nightmare situation and I really wouldn't wish this on anyone, but I am slowly accepting that I will probably have several crying fits of despair every day for a while to come.
In other news I had the MRI today, and it wasn't too bad. I only had to take my bra off underneath my top and then they put you onto a bed with a few pillows, strap you down, give you some headphones and insert you into the scanning tube. It was a little bit noisy, but not extremely so. The worst part was laying on my back which is now killing me! In all about 15-20 mins I think, and the baby kept fairly still till close to the end which was a bonus.
The lady did say to me before the scan that the report states she is otherwise healthy, that it is probably just a cyst and nothing to worry about (and what if it's not I wanted to say!). She was very very nice and reassuring though. The downside to it all is that I now have about 10 days to wait for any results. The earliest I might be seen is this Friday, and the latest next Wednesday sigh. Though I know time will change nothing, I am just so lost and frustrated not having any answers.
Hey all, thank you for thinking of me.
To update the thread, towards the end of this last week I became increasingly hysterical and decided to take myself down to the Fetal Medicine Centre in Harley Street for an appointment with Professor Nicolaides. I think it was out of sheer desperation really, I just wanted an answer...any answer, rather than nagging and annoying my consultant when I knew he couldn't tell me anything more without the MRI results.
My appointment was about 2 1/2 hours behind schedule (a note if you ever need to go), but they do tell you to phone beforehand to check delays and with rush hour traffic I waited just over an hour.
The sonographer I saw was nice, checked the baby all over very thoroughly, but once again she told me she'd never seen anything like it before and couldn't guess what it was. BUT she said, if anyone would know Nicolaides would. After about 30 mins of scanning Nicolaides walked in and in the space of 5 mins - took a peek, determined that it was probably a teratoma, that the baby could possibly be saved 'if' I choose to continue the pregnancy, that I should go back to my consultant insist on an urgent referral to GOSH, and that btw teratoma's can grow to be 'massive'. He then left the room
So if anyone saw me leaving the waiting room that day, I was the one with bright red eyes - eek! Needless to say I felt worse than ever following that app, so the following day I rang the hospital in tears asking to speak to someone and to their great credit the lovely receptionist/midwives listened to me and slotted me in for a quick chat with my consultant on Friday between appointments.
Luckily enough my MRI results were in and the diagnosis is now most likely a Lymphatic cyst, also known as a Lymphangioma. The location at the base of the tongue is unusual and according to the results it is taking up most of her oropharynx at present so complications to some degree are almost inevitable. I was told off for Googling myself into a frenzy and my consultant seemed mildly optimistic, but to be honest he is sooo laid back I can't tell what he might actually be thinking. I think the main issue with lymphangioma's in this location is they cannot simply be cut out completely, and he mentioned the possibility of future issues with eating and speech.
He said the next step is an appointment with a pediatric surgeon at Great Ormand Street Hospital in the next couple of weeks, and further monitoring of the growth. I didn't ask about the prognosis, but termination was sort of mentioned in a roundabout way...I'm guessing if in the near future they feel that operating is futile the choice is there. It's not something I'm entertaining at present.
So...that's it so far. My next appointment is on Wednesday, and from there I should hear more about meeting with the pediatric surgeon and an update on the cyst's growth (not sure I want to know this though).
I have to admit I am feeling a little bit better now I know more, but I'm still aware that there is a long road ahead and many risks involved.
Well that sounds fairly positive to me.
Although Professor Nicholaides sounds a bit gung ho!
Either way nobody has mentioned the worst. You do have a long way to go and a big ordeal ahead, but there's always hope. 
Maybe you should call her Pandora!
Wishing you both strength. xxx
Sounds like a cause for cautious optimism, Happy. In my experience, doctors will do anything not to give you false hope, so the fact that they're being in any way positive about the chances of successful treatment is very good.
My niece was born at 24 weeks and she was 2 before her paediatrician would finally accept she was probably going to be okay (She's 9 now and pretty damn fabulous.)
Thank you for the update! Yep, the professor's bedside manner is, um, interesting. It's easy to deal with if you're getting good news or only have a little worry (as I did in my case when I saw him).. less so if there's something more seriously wrong. He's usually not far off with things, but I guess an MRI is going to reveal more information than a regular ultrasound.
You're what - nearly 26 weeks now? What have they said about delivering really early and having surgery if the mass (whatever it is!) appears to be growing too much? I guess it's all about a balance and picking the "right" moment for an optimal outcome.
adaloveslace is absolutely right - nearly all doctors love to give worst case scenarios so you are prepared which I do agree with. False hope can be a killer. They're reluctant to be optimistic unless they really believe there is cause to be (unless they're just shit doctors who don't know what they're looking at, which also happens). So that is promising. When I nearly lost DD2 at first mine gave me 50/50 odds at best, then when I was being discharged from hospital post surgery and things had looked good for a week, he said I had good cause to be optimistic now. He was right!
Very glad you are getting the referral to GOSH. Thinking of you! 
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That all sounds so much more positive, Happy. It's really good news that her cyst hasn't grown and hopefully it will stay where it is. I know it's hard not to think about the future and the problems she might have down the road, but for today you have a healthy little 2lber (!) who happens to have a cyst.
You are being incredibly calm and rational and I really admire you for it, as I can only imagine the emotional rollercoaster you've been on. But keeping a cool head (and allowing yourself tears when you need them) strikes me as absolutely the best way to approach this.
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