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Bad news at 20w scan - CCAM

(36 Posts)
OldFarticus Tue 02-Aug-16 13:19:42

Hi all

Just wondering if anyone has any experience of the above? I am 20 + 6 and went for my scan yesterday. I was told that there is a mass on DS' lung (over 1 cm, which sounds huge relative to his size) which looks like CCAM.

I am devastated. This is my first baby and likely my only one due to my age. I have been - grudgingly - given an information leaflet by the consultant (after chasing her all day and spending a very sleepless night), but not advice other than "watch and wait". She does not seem very interested and just gave me an appointment on 18 August for a scan with another consultant - presumably one who specialises in this condition. The leaflet is less than 1 page long (!) so I am franctically Googling and scaring myself silly.

Can anyone tell me anything about their experiences with CCAM? Were you treated with steroids? Did your DC need surgery after birth? The leaflet suggests I might have to change to a hospital with paediatric surgery facilities which suggests that they are expecting to operate soon after birth. That scares me witless.

Can anyone offer any advice? TIA flowers

Whatsername17 Tue 02-Aug-16 13:57:04

A quick Google suggests that they are going to wait to see if it shrinks which can happen in many babies. I have no personal experience I'm afraid but googling makes it sound quite treatable. I think you need to try and speak to a medical professional to ask what the process and options are. Good luck xx

Jodie1982 Tue 02-Aug-16 14:16:40

I've no advice but wanted to send your little one all the best wishes. I'm surprised you haven't had any advice or support, your consultant sounds rather unsympathetic.
Hope everything will be ok. cakeflowers

OldFarticus Tue 02-Aug-16 14:44:03

Thanks you Jodie. I am surprised too. The measurements on the scan report seem insanely huge compared to the size of him and yet I can't even speak to anybody about the implications until 18 August at the earliest. I know they do not want to speculate at this stage but its left me feeling very much at sea.

user1467983757 Tue 02-Aug-16 16:07:40

Just offering hugs no advice. Keep us updated xx

ImYourMama Tue 02-Aug-16 16:13:01

I was born with cysts in my left lung and it was removed when I was 6 days old, this is 25 years ago and I'm completely fine and have been since I was a baby. If there is anything wrong then it can be treated and doesn't have to have any lifelong issues attached. I hope this is a helpful response, I've got my 20week scan tomorrow and dearly hoping all is ok. Sending hugs OP

sj257 Tue 02-Aug-16 18:32:28

I can't believe they haven't given you more support. I know nothing about the condition but surely when anyone is given news that something isn't right on a scan they should be supported as soon as possible? Sending you lots of love xxx

Happy16 Tue 02-Aug-16 22:50:38

flowers

OldFarticus Wed 03-Aug-16 09:20:12

Thanks everyone. I have been given the details of a fetal surgeon in Belgium by a friend. I just never expected to be trying to figure this stuff out by myself and without any medical support. As far as I can tell the mass they have found is about half the size of his whole chest cavity at the moment and its on the left ie same side as his heart. sad

I always thought the NHS got it together when things went seriously wrong and I can't believe we have been left like this. It's just unbearably cruel.

user1467983757 Wed 03-Aug-16 09:33:15

I hope your app on the 18th gives you clearer and calm information xxx

FruitCider Wed 03-Aug-16 09:36:13

That's incredibly cruel. Can you ring the department and state you need more information? I think I would make a complaint if they don't become more supportive actually!

OldFarticus Wed 03-Aug-16 09:43:19

We rang and rang and rang on the day we found out. There was either no reply or the consultant's secretary just got shirty with us because she had already pased on the information.

We called later that day after we thought her clinic would have finished - she had already left. We called first thing the next morning - she was not in yet. Then much later that day I got a few lines of an email attaching a 1 page leaflet which is like a "Noddy's guide to CCAM" - it just contains nothing detailed or useful. I was told to attend a scan on 18th with another person who seems to do the same job as my consultant (and to make every effort to attend as she would be on holiday until September after that date). Maybe she has a special interest in CCAM or something - but there is nothing on the hospital website or even in her BUPA CV that I found online to indicate why she is the person I need to see.

It's bloody awful - there is literally nowhere to turn.

FruitCider Wed 03-Aug-16 09:47:19

I reckon contacting PALS is your next step in that case. They can't just leave you with news like that!

notapizzaeater Wed 03-Aug-16 09:48:20

That's shocking, leaving you in limbo for 2 weeks. Can your GP / midwife suggest somewhere else ? Maybe FMC in London ?

gingerbreadmanm Wed 03-Aug-16 09:55:04

hi old have you tried Arc? they are a charity specialising in things diagnosed during pregnancy and will likely have some information on this particularly from parents that have experience.

this isnt quite the same but my an issue with my dn was diagnosed at her 20wk scan, it was an oversized gallbladder. they kept an eye on it and scanned her when she was born and it was normal.

i think the fact the consultant is so laid back about it is a good sign and i would try and follow their lead a little.

FWIW my ds was diagnosed with severe PFFD at his 20wk scan. I had to tell the hospital what his condition was as it was so rare so i kind of understand how difficult this is for you.

gingerbreadmanm Wed 03-Aug-16 10:08:09

The Trust should also have a midwifery counsellor who you can speak to.

NeoShadowChaser Wed 03-Aug-16 10:11:51

Could you try speaking to your midwife?

OldFarticus Wed 03-Aug-16 10:17:10

Midwife is useless - I tried to reschedule an appointment around the 12 week mark but there were none available within about a 4 week window. She said "oh well, just call us if you need us". Great.

I assumed it was because I was consultant-led, but the consultant is not interested either.

Thanks pizza - we are in the NW but I will look up FMC. I am happy to pay privately if it means we get some answers but there is literally nobody we can even talk to about that.

CrumblyMumbly Wed 03-Aug-16 10:18:45

I'm sorry you have not been very well supported with this.. Some consultants have a god complex and treat mere mortals with contempt. Mine was the same and I asked to see another who was lovely. Speak to your midwife initially and say you would like more information and advice about this condition. This is what they are paid for so don't feel bad about pushing for the service you deserve. Hope it all works out.

P1nkP0ppy Wed 03-Aug-16 10:26:16

Can you ask you GP to refer you to a different consultant for a second opinion? I makes me fume when people get treated like this.
Fingers crossed for you op 💐

hopinghopefullyagain Wed 03-Aug-16 10:26:31

I'm afraid I know nothing at all about CAAM but, as someone who was given devastating news at a 20 week scan with very little support or information, my advice would be to find whatever information you need yourself from here on in. Google, Facebook support groups, research papers online are all your new friends. ARC can be very helpful but I've no idea if they would be appropriate in your situation. Good luck.

OldFarticus Wed 03-Aug-16 10:35:46

Sorry to hear that hoping.

I was hoping this was a one-off sad

Itscurtainsforyou Fri 05-Aug-16 23:38:04

Hi there - I'm really sorry that they've left you like this, it's horrible being in limbo.

I'm in the NW and know someone who had CCAM. As I understand it there are varying degrees of severity/treatment for this, his was quite serious as I believe he had a medical procedure before birth then an op shortly after birth. He is now home and doing really well.

He was monitored at and born at St Mary's in Manchester, the surgery was carried out there (well in the children's hospital which is just down the corridor), then after a few weeks was transferred to his local hospital, then home. My experience of St Mary's is that it's excellent - I think his mum would've gone elsewhere if she'd been at all concerned.

His mum is on a CCAM Facebook group which she's found really helpful, it might be worth checking that out to get support and advice from people who've been in the same situation.

Sending you flowers and hope you get some answers soon.

OldFarticus Sat 06-Aug-16 15:58:55

Thank you curtains flowers

We are in Wirral, but I used to live in Manchester so I know St Mary's well. One of my husband's colleagues told us that the person we are seeing in a couple of weeks is a fetal medicine specialist. So at least we seem to have been referred to the right person.

We have also been advised that he might need to be delivered in a hospital with a paediatric surgery facility. The nearest to us is Alder Hey (which has no maternity care!) and I would really hate for the baby to be operated on while I was stuck in another hospital.

I just have to be patient but it was never my strongest suit! Glad to hear your friend's LO is doing well. smile

PotteringAlong Sat 06-Aug-16 17:02:05

If alder hay has no maternity care you won't deliver there - I imagine Liverpool would be the closest place to you with both?

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