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Children's health

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Original poster

babies with ccam

10 replies

laineandade · 02/12/2009 14:26

hi just wondered if there are any parents out there whos babies have ccams (congenital cystic adenomatoid malformation ) my son is 9months old an not showing symtoms would love to get intouch with others with the same condition

OP posts:

sezo · 29/03/2010 18:10

Hi, My son is 10 months now and we got the diagnosis CCAM at 20 week scan. When he was born he had no symptoms either. He had surgery at GOSH at 12 weeks to remove 2/3 of left lung and is now happy and healthy little fella. Feel free to contact me if you need to.

Original poster

laineandade · 20/04/2010 12:49

hi my son is 14 months and hes a ccam which was upper right lobe when he was born and is now middle due to normal tissue growing around the ccam, hes due to go for surgery on 29th of this month at alder hey childrens hosp it would be nice to have others to talk to who have kids with the same condition

OP posts:

sezo · 30/04/2010 23:26

Hi, We are thinking of you, it will be a tough week there is no denying it, but there is light at the end of the tunnel. My boy is now very healthy and I'm sure yours will be too. Keep in touch.

jakih · 06/05/2010 00:10

My daughter is expecting a baby, diagnosed with ccam & hydrops at 12 week scan. She was devastated to hear there was little chance of survival & given the chance of a termination. She decided to let nature take its course & now the baby has made a miraculous recovery. The 30 week scan showed no trace of the ccam, although she's been warned that it could still be there & that the baby will probably need surgery. The chance of survival has shot up from 8% to 97%. Ccam affected lower left lobe 3cm in size.
Baby due 2nd July, fingers crossed.

sezo · 06/05/2010 15:28

I will keep fingers and toes crossed but I'm sure it won't be necessary. A doctor at Kings once told me that CCAM was a lot of fuss about nothing most of the time and he was dead right. I hung on those words for so many months and will now be celebrating my sons 1st birthday on june 2nd. He is so full of beans and loves toddling around getting into mischief, he's a real comedian. We were offered a termination but made the decision to give my little boy some hope of a normal life. My percentages were very similar to your daughters it's been tough but with support she'll get through it. His CCAM was left lower lobe and 5 cm. He also had 3 bronchial tubes, one of which lead to a blind cyst. All these were removed in the surgery at 12 weeks, he was admitted to GOSH for 5 days and we have had NO post operative problems. Good luck but i'm so sure you won't need it, feel free to contact me

jakih · 06/05/2010 16:50

Many thanks for your reassurance Sezo.
My daughter only told me she was pregnant(30 weeks) last week, because she was so sure she was going to lose the baby & didn't want to talk about it. I'd noticed she'd put on weight but she denied she was pregnant. She's now struggling with the fact that she's actually going to have this baby after being in a state of denial for five months. Her GP has told her it will take time to take all this on board, but I'm worried about her. I find it difficult to understand how the baby's chances of survival have changed so much. Most Ccam babies seem to be diagnosed at their 20 week scan, yet hers was seen at 12 weeks, when hydrops was also diagnosed. I haven't been able to find another case like this.
Anyway, I'm so glad things have turned out so well with you & your little one. I hope things turn out the same for my daughter.

sezo · 06/05/2010 20:58

I am so so sure they will. When we were diagnosed they gave us worse case scenario but told us that the cysts could disappear or stay the same but the baby would get bigger hence the potential improvement in the condition. You haven't heard of it because it only effects 1 in 35,000 babies so I've read. All we wanted was our families to be there for us if we needed them and they were brilliant. They kept talking to us really positively and made us look at the future. We had loads of tears and lots of evenings staring at him wondering if he would survive surgery. But it now seems like it happened to somebody else and I was watching a bad TV show. All you can do as a grandmother is react to your daughters emotions as they happen. If your daughter wants to contact me feel free

jakih · 06/05/2010 23:39

Thanks for being so encouraging. I know I can only be there for my daughter to help her through this. Spoke to her tonight & she is starting to sound much more positive.
The worry of being a Mum never ceases, even when your 'child' is 26 years old!
I will mention this forum to her as I think she would benefit from the support of someone who's been through this already.

sezo · 07/05/2010 21:11

Just glad to help and would be really pleased to talk to her.

Dhano21 · 02/04/2020 21:21

Hi just had my 16th week scan and have been told my little baby’s heart has been pushed to the right side of its chest . We went for further scan and have been told that the baby lungs are so solid it’s pushed the heart. I’ve been told that this is called CCAM I’m really scared can anyone with a similar experience share their story and what to expect pls ?

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