CCAM detected at 20 week scan, quite a big one. Hand holding from anyone much appreciated.

[mrsgboring]

First pg ended in stillbirth. Second PG thank God DS born well and fine with no real problems -he's now 3. Third PG this - pretty rare abnormality, looks like quite a big one of its kind, it has moved the heart over the RHS of the body but detailed cardiac scan suggests heart is still functioning fine.

I cant believe this is happening to us. and I might end up having had 3 awful pregnancies, 3 labours and only one live child.

[SantaKLAWs]

Sorry, don't know anything about CCAM. what is it?

I feel for you and wish there was something I can do to help but all I can do is send my thoughts and hugs.

[hollyivypoppy34]

what other expertise have they offered you to give you a better idea of prognosis? also have you been in touch with ARC as they may have someone who has been through this and could provide more rl sympathy (with the best will in the world someone who has had something like this is prob a good source of support). Also if heart functioning fine that is something isn't it?

My heart goes out to you as I lost a child due to congenital abnormalties at 20 weeks and I think it haunts you even more when you've had things go wrong once.

[ToysAreLikeDogs]

Mrs B thinking of you

[mrsgboring]

It's really rare, there's no reason you should know, I'm just a basket case.

Basically, it's a cyst or tumour on the lung, benign but if it gets too big it can press on the other organs in the chest cavity and cause heart failure, at which point they would have to deliver and operate immediately.

Best case scenario, it stops growing or shrinks, baby grows normal lung tissue round it, there is sufficient room for the heart to grow normally and they operate (possibly keyhole surgery if small enough) when baby is 6 months old.

As I understand it (which is not a lot yet) it is a bit of a race between baby and tumour. We have to hope that the baby can grow sufficient healthy lung tissue round the tumour to have a chance of breathing at delivery. Assuming s/he is not stillborn, an operation can be done immediately to remove the abnormal tissue and release pressure on the heart. If everything else is good round the tumour then the prognosis is reasonably good, but for the next four weeks at least it's a waiting game to see if the tumour grows, shrinks or stays the same and how well the baby stands up to it.

Thank you for your thoughts and hugs. Am a bit lost at the moment and don't really want to face anyone IRL except very close friends and family.

[WorzselMincepieYummage]

So sorry you are going though this, you must be terrified (((hugs)))

I dont know what ccam is and no real words of wisdom or anything but i'll be thinking of you and praying too x

[mrsgboring]

Fio, that is a fabulous link, thank you. All I've found so far are scholarly papers (some written by the consultant and surgical team at my hospital so a good sign)

[mrsgboring]

Hollyivy it's a real don't know at this stage. Many CCAM babies do really really well, but some don't. Until they can tell if the tumour is growing (at 24 week scan) they can't say much, but I got the general impression that because our baby's tumour is larger than average, it could be a cause for concern.

The paed we spoke to said it's probably 50 50 whether this develops to be serious or is less of a cause for immediate concern. Some disappear altogether by birth but ours probably won't as it's so big.

[mrsgboring]

Thank you Worzsel I can't pray at the moment (I just can't seem to in pregnancy anyway) so that would be very much appreciated.

[mamakim]

Mrsg just wanted to offer my thoughts. Fingers crossed for you.

[hollyivypoppy34]

thinking of you and keeping my fingers crossed - horrible to ahve to wait though esp 4 weeks at this time of year (like there is a good time to go through this). And that link was a good story.

and feel free to share on here - I know what you mean about just wanting to keep cocooned from most people in real life when somethign like this happens.

[mrsgboring]

Thanks, mamakin and hollyivy(again). It has been a very weird day from start to finish. Oddly enough, the sonographer was off sick, so the scan was done by a consultant who turns out to be the resident expert in just these cases, so at least we were spared the "there's something there, we need a consultant to scan you" that would have happened if it had been anyone else doing the scanning. The hospital has been tremendous. We saw nearly everyone within a couple of hours of the scan, and they made all the new appointments for us. I think I'm going to cosy up to my community midwife and try to arrange for a quick check of the HB on Xmas Eve, just to get me through the Day Itself.

I don't know if Christmas is a blessing or a curse atm, probably a bit of the latter (thinking of all the church services hearing about what I can only think of as a woman giving birth without proper antenatal or obstetric care ) but at least there's plenty of distraction going on and I have the opportunity to spoil DS outrageously.

Horribly enough, I feel like Mystic Meg at the moment. Told DH I was worried about the scan because it's always the thing you least expect that happens, and we've never had an anomaly show up on a scan before (until DD was stillborn and that was confirmed by scan)

I am rambling now. Sorry.

[hollyivypoppy34]

It must have been a dreadful shock - when I tihnk about when I found out about my son it was a bit like being in a film as remember feeling out of body. Its good you got to see everyone and the consultant did it . and I agree a hb check on christmas eve is a very good idea as it'll just play on your mind even more if you don't have some reassurance.

its ok to ramble.. some of my posts when it all happened to me are not so much a ramble as a coast to coast walk but I know how it helps to vent here as you need an outlet.

sending you and both your babies bigs hugs

[Juliette75]

MrsG
Just wanted to say hello because I remember you when you posted me a really kind reply regarding pregnancy and stillbirth. I am 22 weeks pregnant after a stillbirth and you reassured me it was possible to have a baby after a stillborn child.

I am thinking of you, and wanted to reassure you that you are definitely not psychic, or that all your worst fears and thoughts are not predicitions of what will happen. I know that you will be thinking very sad thoughts and have great fears, but your thoughts can't and won't influence what will happen. It is a very very lonely place to be in and I am so sorry that you have this anxiety.

I really am thinking of you. Do secure that Christmas Eve appt. I have a scan on Christmas Eve too.

[mrsgboring]

Juliette - glad to hear from you again. I was wondering how you were doing but couldn't remember your MN name well enough to search for you

I don't really fear myself to be psychic at all, don't worry, but thank you very much for the reassurance. You're right, this is a scary time; I'm numb more than anything else. But pregnancy does that to me anyway.

Here's hoping for good things for both of us in Spring 2009.

[TheTwelveDAISYOfChristmas]

no experience, but I can do the hand holding and hoping for the best case outcome for you all xx

[Juliette75]

Thanks Mrs G. I have a pregnancy mumsnet name and another one for other chat! I have obviously split into two...

Thanks for your good wishes.

[MissisBoot]

Mrs G - I looked at your profile after posting on your other post as a friends baby had a diagnosis of CCAM and wanted to check whether this is what your baby may have.

My friend found out at about 32 weeks iirc - it wasn't picked up at her 20 week scan and was only discovered because she was measuring so big for her dates and it turned she had too much amniotic fluid because her baby was unable to swallow very well - she was literally about to pop. Her local hospital had no idea about CCAM and transferred her care to a hospital 80 miles away.

Her ds was born at 38 weeks and operated on within a few days of being born - they removed the cysts and left him with less than a quarter of his right lung - It was touch and go for a day or so, but he is now doing really well 8 months and is a very content happy little baby. His lungs are starting to regrow and they are expected to be full 'normal' size by the time he gets to 2 - he was home within 2-3 weeks. He too had a very large cyst covering the majority of his left lung.

Just wanted to let you know that someone else has been through it too and has had a positive outcome - my friend doesn't post on mn (that I know of) but I'll try and point her this way.

Its good that its been picked up early and you'll receive regular monitoring and support especially if you've got a consultant who has knowledge of CCAM.

[mrsgboring]

Thank you for more positive stories (went out last night and didn't read, sorry). Most of the outcomes for CCAM are good. I know that, but we don't know if we're going to be the unfortunate ones where it's not good (we have fallen foul of a 1:1000 risk of having unexplained stillbirth and now a 1:10000 risk of having a foetus with CCAM so I don't feel too lucky right now.)

PregnantMerryYuleWitch - that is amazing, how old is your friend?

[laineandade]

hi ive just read your post and thought id let you know your not alone im going through the same thing now, ,my babies ccam wasnt picked up till 23wks even though id had scans every 4 wks from 8 wks due to loosing a baby to pataux at 23 wks, its lonely and scary and ive locked myself away from everyone , my babies cysts are on his right lung measuring 20mm each, they saw 3 at first but at my last scan said only two were visable, im due to go for 30wk scan on friday,although i do have to go for a glucose test on thurs as im measuring 3 wks bigger than i should be so im worried incase its fluid on top of it all, its hard to keep going weve not bought a thing for this baby yet we are just too scared, we are living day by day dont know how else to cope, just wanted to tell you your not alone and we know exactly how you feel good luck xxx

[Oliboli]

Hello Ladies.
I have never been on a web chat site before. I am a virgin chatter!! Ha Ha.
I am 29 weeks and have baby girl with c cam.
Was picked up at my 20 week scan (Brighton)and have been scanned every 3-4 weeks since (At Kings, London). Next scan is Christmas eve.
I understand you all being so nervous.
Modern technology shows us so much now. Whilst that is great- it also means we have more to worry about.
I am sure you are all well read on c cams, but thought you might be re-assured to know that 95% of c cam cases have a very positive prognosis. Personally this helped me to put everything in perspective.

After all it is perfectly possible to live a normal life with just one lung. And in most cases c cam only affects 1 lobe of one lung. So all our little ones have a fantastic chance of a normal life.

So long as we are being monitored regularly, and so long as we get to give birth somewhere with a neo natal unit- we should all stay psoitive.
I am a great believer in positive thinking/ energy. If you stay strong and positive for your baby- he/she will feel that.

Happy Christmas everyone
xx

[Oliboli]

mrs G-Forgot to say. I do not know if you got that Christmas Eve appointment, but if so, good luck for tomorrow.

[WorzselMummage]

How are you getting on now Mrsgboring ?