Bad news at 20w scan - CCAM

[OldFarticus]

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

Personally I'd try to be booked in to St Mary's as there's no problem with transferring babies from maternity to paediatric surgery (literally just down the corridor).

We had to have a couple of operations (at Alder Hey as it happens, which was a fantastic place) and it was always a case of "is he well enough to travel?" so that would reduce any potential delays etc

Thanks Curtains. I will see what they say on 18th and then decide. St Mary's is tempting because it's all on one site.

Wishing you all the best. Please let us know how you get on on the 18th

Thank you

useful info

OP apologies if this stating the obvious but I just wanted to remind you that your little one won't be using his/her lungs yet. Thats why wait and see is considered OK with this condition.

Thanks 123 - that is very useful. I know there is nothing they can do at the moment, but I just feel a bit lost. I have checked the fetal measurements and the mass is about half of the current diameter of his chest and in the upper left lobe closest to the heart. I have read that sometimes - albeit rarely - they shrink without trace so I am hoping that DS is one of the lucky ones.

Ironically since my scan he has become loads more active. It feels like he is Morris dancing in there! I know it probably means nothing but I am trying to take it as a good sign.

Hi OP

First of all I'm sorry to hear how unsupported you've felt, I hope the next consultant is much more helpful and supportive.
My sister was diagnosed with CCAM before birth. I was only 4 at the time so can't remember all the details, but know that for a while the cysts grew bigger and they were concerned about her heart.

Then at some point in the pregnancy (not sure when sorry but I think fairly late on) they just started shrinking by themselves. It was still expected that they'd have to remove half her lung at birth, so when she was born there was a whole team of doctors waiting. However, she was born perfectly healthy and was able to go home after a couple of days :)

She's an adult now and hasn't required any treatment or surgery of any kind, and hasn't had any problems with her lungs.

Again I'm sorry I can't remember all the details, but I hope that gives you some encouragement, and that your scan goes really well on the 18th :)

Nothing useful to add but hugs and empathy for you OP. The waiting game is awful. Not quite the same but my ds's first heel prick test came back as reading high IRT levels so he had to have a second. After two weeks no results had been sent to my Dr. In the end my midwife gave me the name and number of a very nice lady in the hospital lab itself to find his results. It was the worst two weeks of my life. Turns out he is a CF gene carrier but doesn't have CF itself. I hope you get the advice and information you need soon.

Op I hope you are doing ok! This thread randomly came up on my google search. My son has a ccam we found out at our 20 week scan and he is about to turn one. We are still waiting on a surgury date but hoping it will be soon!

On Facebook there are two ccam support groups, mums of ccam babies and parents of ccam babies.

I had induction as we lived over an hour from the hospital I was delivering at. Continuous monitoring for his heart as the ccam had pushed it over, neonatal team at birth and he was monitored for 24hours. X-ray at birth and ct scan 2 weeks after. My son has multiple cysts so we have decided to have them remove however in the uk there does seem to be a sit and wait approach if baby isn't suffering.

I hope the rest of your pregnancy is going smoothly!