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.

Hi Mrsqboring,
I am Annie from Hanoi, Vietnam, but partially I am a Harrower as I lived in Harrow for nearly 8 years and just came back to Vietnam a year ago.

At last I found someone on the same board.
I found out my baby has CCAM on 22nd week scan, exactly a month ago, on the 27th Nov08.From then I went to about another 4 scans, with leading doctors. The baby has CCAM type 2 in his left lung pushing his heart to the far right and make no room for the right lung to develop.They said CCAM develops in all of his left lung, and they all advised me to cancel my pregnancy.
I went around the internet, found out that if the baby is not developing hydrops and he can survive until after 32 weeks, he will have operation after birth, and then with many other things can happen. Worrying about the little baby has operation, which must be very painful for him, I went to hospital to cancel my pregnancy. I stayed in there for 2 weeks, on and off by the weekends, and I had some medicine transfusion to my blood to make me go into early labour. They couldn't use anything else because I had a C section only over 2 years ago when I gave birth to my 1st child. After 15 of 500ml bottles, the baby is still there and I don't feel any pain/ blood leaking... any sights of early labour at all.
The option they said now, that I have another C section to take the baby out. I was confused. If I need to take the baby out that way, I would leave the baby there until it due date or at least until it develops hydrops. In the last attemp, I texted one leading baby surgeon, asking his opinion. To my surprise, he called me the next morning, telling me to keep the baby, and he will operate for the baby once the baby is born.
I've checked out the hospital the same day after asking if the medicine I used harm the baby and they said no.
I am now at home, worried and confused. My family side, with 2 doctors and other rational people, keep saying I have to cancel my pregnancy, because the ill baby will ruin my life. My husband's family, on the other side, fully support my decision to keep the baby and they said they will even sell the house to fund the baby's treatment.
I am due to get back to the hospital to give them my final answer today, but I just avoid doing everything and going anywhere.
It is a hard decision but I want to give the baby every chance he has.
Ladies, what is your opinion?
Mrs G, hug and hug.

Annie

MrsG. so sorry to hear that, I hope everything will go ok for you.

If it helps at all, like The Pregnant Yule Witch, I know someone whose organs are all switched round. She is my aunty, she's nearly 40, and has 3 children, and leads a normal life.

Goldfishn- I just wanted to say that I read your post and I wish to commend you for your courage and hope that all goes well for you and your baby. The surgeon you texted, who told you to keep your baby and that he would operate has offered you a chance.

CCAM generally means problems during pg and in the first few weeks of life, with modern medicine most problems are resolved surgically if necessary. CCAM does not automatically mean that you will spend the rest of your life caring for a very sick child.

Be positive - you have been so strong.

I also wish Mrsgboring and those of you also going through the same thing all the luck and strength in the world.

Thanks Alors so much.
Mrsgboring, please keep us update and together we keep up hoping.
Annie

Hi,
I've scanned most of these posts - there are so many!
My baby was diagnosed with a CCAM at the 20 week scan - we told to go away and come back at 29 weeks, when they would ascertain whether or not it had grown and if she was at risk. It was an awful 8 weeks, but we were rewarded with good news as it had not grown. She was born at 42 weeks, quite healthy, and screamed just as loud as her sister which says to me that her lungs are just fine! After a CT scan, we've now been given a date for 2 weeks time for her to have the offending tissue removed. She's 6 months old. In the last 6 months you would never have known that there was anything wrong with her, but they need to remove this type of tissue as it can cause problems in later life. Anyway, I wanted to say how good it was to hear other people's stories, and wanted to post a positive story. It's NOT all bad, and with the wonders of modern medicine can be managed in most cases!

HI rachthegeordie and all the ladies,
It's been nearly 2 months since I last checked the forum.
I am in my 35th week now. 32nd week scan can't see anything wrong with the baby's lung - of course CCAM is still there and the heart back to normal position, but as rachthegeordie said the baby will need the operation to remove the wrong tissue, but by the way, thanks God, so far so good, at least my baby's doesn't have the CCAM develop bigger at 32nd week.
Thank you ladies again for all of your supporting lines.

Hi Ladies,

So Happy I found this site. I too have learned that my baby had a CCAM. At first, Dr's wantd me to trmrinate the pregnancy but there is just no way I was prepared to do that. Since the diagnosis I have had 3 more ultrasounds and nothing has changed. Yes, the Ccam appears to be larger but the baby is also bigger so its all relative to the size of the baby. So many thoughts are running in my mind... I dont know where to start....I feel a bit anxious about labour as they want me to deliver naturally so that I'm able to be with the baby. The Hospital in our city that will care for the baby isnt the same hospital with the specialists that will care for me. In fact the hospitall that cares for childrn dosnt have any delivery beds, so essentially the baby will have to be transported immediately. I'm curious about breast feeding and the very important first 3 days after the baby is born... is there a way I can pumped and thy can feed the baby. Also, if the baby in fact needs surgery, Will it need a oxygen tank.... I have no clarity and noone has any answers....