babies with ccam and hydrops

[kaywhite27]

I am currently 23 weeks pregnant - we found out that there was something ''wrong'' with our baby during scan 20 weeks. They found CCAM with hydrops and they gave the baby little chance of survival (less than 5%) & offered us termination. but we decided to do MRI scan. Its gave us the same results. The baby has cysts in the left lung. Her heart was being displaced. The right lung is only 3rd size of the actual size but its because no space for that to develop.

Please let me know if anyone been through this. Any advice gratefully received

Thanks

Sounds like a very difficult decision to make. A friend's baby had CCAM - diagnosed at 30 weeks. Baby had the same situation - cyst in one lung and other lung v small due to lack of space to grow. She wasn't given survival odds as far as I know.

Her pregnancy progressed as normal - although carrying huge amounts of fluid so v uncomfortable for her. She had a normal delivery at about 38 weeks iirc. She delivered in one hospital and then baby was transferred to the children's hospital for icu. The first 36 hours were critical and initial tests looked as if surgery was going to be difficult. At one point I really didn't think the baby was going to make it. The baby was a good weight and docs operated at about 5 days old to remove the tumour/cyst. He made an excellent recovery and was back in the local hospital after about 10 days and then back at home about a week after that. He is now a healthy four year old - full of energy and lungs have grown back to capacity.

Don't know if that helps at all? Perhaps post on the antenatal testing board and you might get some better advice from others who've had similar outcomes from scans?

Hi,

Thanks for your reply and i hope to get more advices from people gone through similar.

Can you please send me the link for antenatal testing board.

Thanks very much.

Sure - here you go:

www.mumsnet.com/Talk/antenatal_tests_choices

Thanks very much for your help.