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Fetal abnormality and MRI scan?

(34 Posts)
Happy8714 Thu 23-Jan-14 15:28:16

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!

SaggyOldClothCatPuss Thu 23-Jan-14 15:49:24

No further advice here, but I've come over from the other thread for hand holding and support. xx

Happy8714 Thu 23-Jan-14 17:09:07

Thank you so much Saggy, I just saw my question about MRI's answered in another thread a few posts down (doh!)

Had another massive breakdown after more Googling which reveals the most terrible outcomes, everything seems so bleak and I can't see from much of the journal literature how she will survive this. I feel like I want to just switch off and pretend this pregnancy didn't happen and that I didn't ruin my relationship with her father by insisting on keeping her. The emotional pain is probably greater than anything I have ever experienced. Every time I feel a kick it kills me inside. Why me, I just don't understand. I've never been lucky enough to win even £10 on the lottery, but out of hundreds of thousands of births this has happened to lil old me.

My mum ended up telling me off and said I should try to concentrate on other things and let the experts do their job. Argh, I should probably throw my laptop out the window.

getagoldtoof Thu 23-Jan-14 20:14:31

Hello happy, I've come to find you, too. Just wanted you to know I'm thinking of you. Hope you do get the mri on Monday and you get some news.

getagoldtoof Thu 23-Jan-14 20:16:44

Take one day at a time, and that includes not beating yourself up over baby's father when it sounds like he was awful to you. Today is today, you've got enough on your plate without worrying about yesterday or tomorrow.

Cuppaplease Thu 23-Jan-14 20:44:13

Although I have no experience of this I just wanted to say that I'll be thinking of you happy. I've had an MRI myself previously and it wasn't too bad, surprisingly noisy though, with lots of clanking and strange noises. I was in about 20minutes, it really wasn't too bad

Tranquilitybaby Sat 25-Jan-14 00:41:30

Thinking of you, I hope you get some more answers very soon x

NatashaBee Sat 25-Jan-14 00:45:17

Message withdrawn at poster's request.

CrispyFB Sat 25-Jan-14 23:40:19

Will be thinking of you and hoping for some good results.

mozzarellamummy Sun 26-Jan-14 22:24:24

I had a fetal MRI in a previous pregnancy due to several brain anomalies.. It lasted for about half an hour and baby kicked a lot because the noise probably disturbed her. After the exam the doctors commented straight away the pictures they had taken..
I didn't felt claustrophobic but of course it was hard to feel the baby move that much.. I ended up with a tfmr but I'm still not at peace with this decision..
I'm on another pregnancy now waiting for another MRI for similar reasons even if last time I was told it was just bad luck, please try to keep away from google ..that's what I'm telling myself.
Thinking of you tomorrow, I really hope things won't be too bad for your baby..

SaggyOldClothCatPuss Mon 27-Jan-14 08:28:43

Thinking of you today. xxx

Happy8714 Mon 27-Jan-14 15:46:15

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 grin). 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.

CrispyFB Mon 27-Jan-14 16:35:54

Thanks for updating. You sound just like me when faced with a potentially awful outcome - researching everything, weighing up probabilities, going insane at the waiting. It's the waiting that is killer, it really is. You are absolutely right to just accept you're going to be in a bit of a state.

I really hope the days pass quickly for you although I am quite sure they will not!! All you can do is take it one day at a time. It's so hard feeling so out of control over something like this. Most things in life you can alter the outcome by doing something (hence all the research I'll bet! trying to regain some small bit of control) This, you just have to accept there's sod all you can do to change anything and the only answer is time, and that is a really really tough thing to adjust to emotionally.

One thing I told myself when I was given 50/50 for keeping DC2 (incompetent cervix issues) was that no matter what happens tomorrow, today she is still alive and inside me and deserving of my love no matter what. That actually brought me a small bit of peace because until I had that realisation I was afraid to love her in case I lost her. Thankfully she made it, but I had no way of knowing she would for a loooong time. That helped for me, probably doesn't work for everyone though!

Hoping very much you get some news that brings you some cheer and sooner rather than later.

SaggyOldClothCatPuss Mon 27-Jan-14 17:12:37

I agree with crispy Today we are pregnant!
I think the mourning is quite normal. As someone said to me, you aren't mourning your actual baby so much as that 'other' baby who was 'perfect'.
The unknown is horrible, but once you know what you're up against, you're fighting spirit will come to the fore and you'll feel stronger.
Have you heard where she will eventually be treated? I'm under GOSH, and Ill fight to stay there. even if the travel is a bind! I was told they were the best. You could maybe ask for a referral?

Happy8714 Mon 27-Jan-14 18:37:15

Thanks ladies, I do feel like once there is a more official diagnosis I will feel SO much better. Just to get the ball rolling, regular scans an action plan etc.

The continued internet research thing is kind of a control issue, I feel so powerless. There's not a person on earth I can ask for help or advice at this time. There's no one on any forum anywhere who has openly documented a situation identical to I can't even steal some hope from another positive story.

I think the biggest issue regardless of what the cyst actually is, is the fact that if it grows further into her pharynx there is a risk of polyhydramnios and of course all the potential complications that occur with it - preterm labour, placental abruption etc. the risk is quite likely at some point before term and I 'feel' (being pessimistic) that it's very likely to happen from the things I've read involving various lesions in the mouth, throat and neck. I feel like I might even insist on being hospitalised IF this does occur.

GOSH was mentioned by my consultant. He mentioned quite a few things and various people he needed to contact. He was pretty much on it from the minute he spotted there was something there, making calls etc., so I feel he will be very prepared once he has been over the MRI results.

It's just a matter of waiting...what feels like one day extremely long day at a time. I wish I had days like these when I had coursework due back in my uni days!

Mama1980 Mon 27-Jan-14 18:54:19

Hi I just wanted to offer my support and say I completely understand the 'mourning' feeling, you are mourning the easy birth, you hopes for for your baby, the loss of the rest of your pregnancy really, as well as feeling the total terror.
My ds2 was given a less than 20% chance of survival (among other things he had a echogenic bowel and the placenta was compromised resulting in danger to both of us) I felt totally in limbo, frustrated out of my mind that all I could do was lay still (I was hospitalised) and wait. Try not to think too far ahead if you can just focus on one day at a time easier said than done I know.
I wish there were any words to make it better.
On a practical note I was at the royal London and they were absolutely amazing so you are in my experience in very good hands.
I hope you get news soon, I probably haven't helped at all but mumsnet was amazing and kept me sane during that time, for me just knowing someone was there reading/listening helped.

Happy8714 Mon 27-Jan-14 21:04:10

Thanks mama, I read your story on another thread! (I've been reading so much in the last week). Glad you made it through the other side intact! Positive stories perk me up so much, helps me to take my mind off of things and feel more at least.

I know I'm not alone on this uncertain path, there are many who have taken it and they ended up with beautiful babies. I just need to keep reminding myself out loud, that knowledge is power and by my next appointment I will have most of my questions answered and some fears eased.

I will keep the thread updated, and post as soon as I know more. x

adaloveslace Thu 30-Jan-14 10:04:53

Hi Happy,

I've just come across your thread and have no experience or wisdom to offer (except that I know from personal experience that babies can be incredibly resilient in even the most traumatic of circumstances) but your story really touched me. I hope you're doing okay and get answers soon. As you say, knowledge is power.

getagoldtoof Sat 01-Feb-14 15:43:49

Hppe you're ok happy

Happy8714 Sat 01-Feb-14 23:56:43

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 grin

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.

SaggyOldClothCatPuss Sun 02-Feb-14 00:17:24

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. smile Maybe you should call her Pandora!
Wishing you both strength. xxx

adaloveslace Sun 02-Feb-14 12:26:34

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 grin (She's 9 now and pretty damn fabulous.)

CrispyFB Sun 02-Feb-14 13:40:19

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! thanks

Happy8714 Wed 05-Feb-14 18:13:38

Saggy - I'm still searching for a middle name, so Pandora shall be added to the hat! hehe

Thank you Ada, I really am feeling cautiously optimistic at the moment. So much better than a week ago when I felt things were terribly bleak. The diagnosis is definitely much better than it originally was, but due to the rarity of it I guess I'm trying not to get too far ahead of myself. I am really wishing this pregnancy speeds along now!

CrispyFB The early delivery is something I have been wondering about. Unfortunately it seems that there are not many questions they are willing to answer until after I have seen the pediatric surgeon. I was told he would answer both questions about the immediate and long-term future (he is apparently a specialist in this condition), so it's just a wait for that now.

I'd just like to thank you ladies again for being a part of the thread, even when I was rambling it really helped to know someone is listening.

I did have another appointment today with my consultant and fortunately the cyst doesn't appear to have grown at all or much in the past week or so (touch wood it remains that way in the immediate future), amniotic fluid is still normal and she's still swallowing. She's also had a bit of a growth spurt this week and is on her way to 2lbs so I'm glad about that also. The consultant says the cyst will probably grow with her, although it's growth may be unpredictable. He also again mentioned the likely possibility of long-term complications with speech and eating. I have no further appointments until after I've seen the pediatric surgeon and he wasn't in today sad - so here's hoping it won't be too long now!

adaloveslace Wed 05-Feb-14 20:41:26

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. thanks thanks

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