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

Hi, I'm so very sorry this is happening to you. I know it is a living hell. I don't know about your specific problems but I and several other people who post here have had to terminate pregnancies post 20 weeks because of severe disorders. If that is what you are facing then you can get plenty of support and information here. You ask for advice but I'm not sure what advice you want. Perhaps if you can ask specific questions we will be able to try to answer based on our own experiences. It's an awful time for you though and please get all the support you can from family and friends. X

Hi I am so sorry to hear you are going through this, I found out my daughter had CCAMs but not hydrops at our 20 week scan. We had been offered a termination or more tests but instead opted for 2 scans per week along with heart scans etc. The prognosis was still unknown right up until delivery when my daughter came out screaming. My DD had regular CAT scans and chest infections up until she was 2 1/2 when she had a lobe of her lung removed. We are now coming up to her 5th birthday, she is a regular little girl who goes to school cycles her bike etc and just so happens to have a scar that runs under her arm.
We have yearly follow up appointments as noone can sat what will happen in the future but all is good at the minute. Her lung has grown to fill the space of the removed portion.
I wish you so much love and luck with your decision.

kay - i have no practial advice for you sweetheart - just wanted to say how sorry i am you are struggling with this. Virtual for you. Keep talking to us here as, as has been said, there is lots of ladies here who will be able to give you advice and support through this.

Ask questions or just talk - anything goes. More . Keep us posted xx

Hi All,
Thanks very much for your time to write to me and support. I have an appotiment this Wednesday to see if the hydrops and cysts.

I am praying to save her.

Thanks alot for your support.

We're all praying for you and baby my love - let us know how you get on xxxxxxxxx

Hello kaywhite27

i'm sorry for you

i'm going through this also. So far they diagnosed CCAM tipe III or pulmorary sequestration, my OB said i should seek for help abroad, i m living in the Caribbean, they do no have any experience with this here. all i know is from reading online, i have to look for a hospital in the US within my health insurance cover to have a second opinion.
i'm 23 weeks also, was planing to go on a shopping trip for the baby and now all has changed. i'm kind of lost, i will probably look for help close to washington dc where i have family.

I have read online some cases that they were able to treat the hydrops of the baby with a shunt, but each case is different.

i will include your baby in my prayers