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Scan abnormality - Advice or support :(

(19 Posts)
Happy8714 Wed 22-Jan-14 18:22:22

I've had the week from hell I just need someone to talk to.

I'm 24 + 3 weeks pregnant and on Monday I booked a private scan, the idea was just to ease my fears so I could finally relax and maybe take home a few nice 3D pics. I have two other children, but the father was very against this baby being born and hasn't had anything to do with the pregnancy. It's left me feeling very stressed and a bit unhappy.

Towards the end of the scan the sonographer picked up something strange in my baby's mouth. She thought it could be a cleft palate (without lip) and called the doctor for a second look. The doctor saw it too, his description was either it was a cleft palate or a 'cystic mass'. They sent me straight to the Fetal Medicine Unit at my hospital and after a bit of badgering I got a scan by a consultant today.

The results are not good. The baby has a growth at the back of her tongue measuring around 14.5mm x 14.5mm. At this moment it is not blocking anything, but they are not sure whether it's a blocked gland filled with fluid or some kind of rare tumour. An urgent MRI scan is going to be booked at another hospital to see what the growth consists of, and after that they can tell me what the next steps are. The consultant said he had not seen anything like it before. They are also baffled that it wasn't seen on my 20 week anomaly scan and where and why it has suddenly appeared.

They couldn't tell me whether or not this was life threatening and that is probably the one thing that is destroying me inside. I am sooo scared and I've just been crying constantly the whole time. I can't believe it is happening. I haven't been able to discuss it with anyone but my mum, and she is very much a 'get on with it' type of person.

I was told the best thing it could be is a blocked gland that can be drained. Regardless of anything she may need to be intubated if the growth gets bigger and blocks her airways, and may need to be operated on when she is born.

I told the father on my way home from hospital - the first time we have spoken since November. He just told me to keep him updated, tbh I think he would be happier if she didn't live through this, I'm regretting saying anything now. It just feels like one big nightmare.

Pawprint Wed 22-Jan-14 18:30:47

Oh, blimey, no advice but didn't want to read and run.

Thinking of you and hope things will be ok thanks

Pawprint Wed 22-Jan-14 18:31:40

Just to say the father sounds like a stupid, selfish, unfeeling cunt.

Cybercat Wed 22-Jan-14 18:33:56

Im so sorry to read this, I just can't imagine how you feel but Im wishing you the best.

Josie314 Wed 22-Jan-14 18:36:47

Oh poor you. I hope it all works out. Be good to yourself - I can only imagine how stressed you must be.

dramajustfollowsme Wed 22-Jan-14 18:43:09

We had something picked up on a private scan that hadnt been picked up before. I know how you go from being excited about seeing your little one to terrified in just a few moments.
Hope that it is just something simple and easily fixed.

Lagoonablue Wed 22-Jan-14 18:47:08

How soon is the MRI? At least you might get some answers then. Try and stay positive. Easy for me to say I know. All very best of luck, I can understand why you are so worried.

Happy8714 Wed 22-Jan-14 18:57:28

Thanks all.

I was told I would hear back about the MRI scan tomorrow. They requested it as urgent so hopefully it will happen in the next week or so and I'll get to see the consultant around the same time for some more definitive answers.

I have Googled (terrible idea, though as you can imagine there is hardly any info out there about this) and I came across a journal article almost identical to my situation. The outcome was good for both mother and baby, so I'm trying to stay hopeful.

It's just so surreal. I've spent the pregnancy worrying about the most random silly things that could be wrong - this was something I'd never have even contemplated especially after being given the all clear at 20 weeks. To think if I'd never had this scan the end results could have been even more devastating.

I'm just glad I'm finally on the consultants radar and they are now going to do all they can to help her.

Londongirl84 Wed 22-Jan-14 18:58:44

Gosh so sorry to hear this sad Wishing you so much luck x

CrispyFB Wed 22-Jan-14 19:32:52

No advice, just a lot of sympathy. I've had scans that have changed everything before (eventual happy outcome, very different sort of issue though) and I know how horrible it feels to have your world suddenly turned upside-down.

I've also had things happen that are very rare - for instance I caught measles at 10 weeks one pregnancy - there was practically NO research out there at the time! DC2 was fine in the end but it was horrible not having any knowledge about how things will go one way or the other, not even really any statistics to obsess over.

Hang in there! I hope the MRI can shed a bit more light on things.

getagoldtoof Wed 22-Jan-14 20:36:03

I can only imagine what you're going through, but I imagine it's partly the not knowing that must be causing you so much anguish. I really do hope for your own benefit that the mri is arranged very quickly.

Do you have a friend you could talk to in real life? Someone to share how you're feeling with?

Thinking of you and baby and hoping you get some good news.

fluffyraggies Wed 22-Jan-14 20:42:47


Sending you strength OP. Keep us updated. You and baby are in good hands now. Thank goodness you had the private scan! x

SaggyOldClothCatPuss Wed 22-Jan-14 20:54:22

Have a huge two bumps in the way {{{hug}}} and a hand hold.
I completely understand that sick feeling and the huge fear and worry. sad
As someone else said, you are in good hands now. Things are happening and they will soon find out more.
Just remember, that forewarned is forearmed. You know now and can prepare and brace yourself for what if anything is ahead. Discovering that things are amiss straight after delivery when you are tired and emotional and you don't know what is going on must be even more awful. This way there will be a whole plan of action in place and you can gather strength and support in advance.

TKKW Wed 22-Jan-14 21:05:00

Im so sorry I have no experience to share with you but I wanted to say that your post is so so sad and I hope the scan and everything that follows goes well for you. Its ok to get upset about whats happening. Some people can get on with things and others want to think things through to prepare themselves.
Hope all goes well.

Happy8714 Thu 23-Jan-14 05:55:41

Thanks everyone, I really appreciate your responses.

Sleep has just gone out the window for me, I've only been managing a few hours at a time full of weird dreams. And then the moment I wake I get that feeling of dread which hits once I remember all that is happening.

I think being in limbo land is just the worst thing ever. I don't know whether I'm going to have a live baby, or if I should prepare for the worst and no one can tell me for sure...I do think that I'm in the process of grieving now, so should the worst happen hopefully it'll be an easier process. I am just totally gutted. Moments of hope and then deep despair. I want to block everyone out, I don't think I could bare anyone knowing for now.

I'm going to move any further updates to the antenatal tests/choices forum, even if no one reads it feels somewhat therapeutic to document what is happening, and I guess there is a very slim chance it may help someone else years into the future. I'm praying for a happy ending.

SaggyOldClothCatPuss Thu 23-Jan-14 07:16:32

Happy it does get easier. I promise. The limbo passes, you find stuff out, and the shock wears off. You discover that you've still got a baby, not just a possible medical condition.
One day at a time...

SaggyOldClothCatPuss Thu 23-Jan-14 07:23:20

And I agree, you really do grieve. And that 5 stages thing Is completely accurate.
Personally, I found that once it all sinks in and you know any details, not only is telling people good therapy, but it also gives your nearest and dearest a chance to go through the full range of emotions well in advance too and prepare themselves to be calm and supportive when you need them. I cant think of anything worse that hordes if panicking relations to deal with just after baby arrives and im tired and emotional myself. x

elliejjtiny Thu 23-Jan-14 11:40:23

Sending you a big unmumsnetty hug. I've been there with DS4. He had a cleft lip and palate diagnosed at the 20 week scan and ventriculomegaly (extra fluid in his brain) diagnosed at birth. He's 7 months old now and although it has been very hard, and he has a developmental age of around 2 months he is still here, such a happy little boy and better at sleeping than his brothers smile.

Happy8714 Thu 23-Jan-14 15:13:54

Thank you ladies, your messages are so helpful. I'm sorry any of us has had to go through such an emotional rollercoaster, pregnancy is supposed to be such a happy time. My first pregnancy was back in 2005 and looking back I see how much I took for granted! Told everyone at 6 weeks, and not for a second did I ever anticipate anything going wrong! And it didn't. I'm yearning to be that person again.

Two boys and this is my first girl! I felt like I was really pushing my luck this time though...I can't explain it. I don't usually believe in 'sixth sense' or anything like that, but I have really felt uneasy about this pregnancy from day. 1. I felt like I was being a complete hypochondriac because I had no bad news whatsoever and I'd had no complications with my other two children (despite one ectopic).

Going to try and chill for a bit, occupy myself with other things and take everything a day at a time. I seem to be having mini breakdowns every few hours but I'm ok in between.

I guess I can only be thankful it was caught early enough to form a plan of action, but late enough for me not to spend the entire pregnancy worrying if she'd even make it to viability. In a way I wish I'd never had the private scan but ignorance would never have been true bliss in this case.

The MRI scan is booked for Monday...I wish it was tomorrow! Seems so far away. Hopefully not long now until I get some answers on how things may pan out. Then I think I will hopefully feel more comfortable talking to friends/family.

Going to create a new thread in the antenatal tests/choices forum. I think that's the most appropriate place to post now.

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