Cpam diagnosed at 20 week scan. Frightened, anxious and feeling so alone

[Lmt6]

Hi
I am new to mumsnet and I am looking for any advice anyone may have and maybe even some support.
I am 23 weeks pregnant and live with my partner. At our 20 week scan we were told that our baby had an echogenic area in the left lung, after further scans diagnosed as CPAM (congenital pulmonary adenomatoid malformation) that is currently moderate sized. I have been devestated by this news, and despite being told that poor prognosis are rare, I feel plagued by anxiety and fear every day.
My pregnancy was not planned and I have struggled greatly to come to terms with it, even being commenced on antidepressants as a last resort. This makes me feel tremendous feelings of guilt, and feel as though the stress and upset I have experienced have impacted on my baby. Prior to my 20 week scan I was constantly physically unwell, I lost my grandmother and have taken a lot of time off work as I feel unable to concentrate (currently work as psychiatric nurse, however I guess we are the worst patients!).
My partner has understandably been rocked by all of this. Before hand things hadnt been great - I feel constant fears of abandonment, my paranoia has increased to the point where I dont feel I can trust him and I take everything around me and make a mountain to climb, or so it seems. Despite efforts from others, I have never felt so alone or lonely, as selfish as this may seem.
In a way, it feels as though everything around me is changing and running away from me and I have no control, mainly of the way I am feeling daily.
Before everything I was a social butterfly, I always had plans, I have a lot of friends and I loved being out enjoying myself.
Apologies, as I know this all sounds selfish and whatnot, again something I feel guilty for - as they say, pregnancy is meant to be the happiest time of your life..I wish I felt this way.
Is anyone able to relate to any of this and offer any support or advice, in terms of being informed of bad news at 20 week scan, or experiencing similar feelings to myself?
Thank you to anyone in advance and to anyone who took the time to read this.
Leigh x

Just wanted to say hello & to acknowledge what a tough place you are in. You have had a very tough time. There is NOTHING you have done to cause this. It is just horrid chance.
Generally the outlook is good with CPAM
As a specialist midwife I work with women facing issues like this all the time. Many of them feel as confused and lost as you do.
Are your hospital team offering you support?

If you are still around and reading OP I second all the previous poster said. Here is a link to NHS info about the condition where it stresses it isn't caused by anything the mother has done and also gives you the ability to contact other parents who have been through this:

www.uhs.nhs.uk/OurServices/Childhealth/Neonatalsurgery/Conditionswetreat/CongenitalCysticAdenomatoidMalformationoftheLung.aspx

I hope you're okay and are supported.

Hi OP, not sure you’re still around, but my son has CPAM. He’s 6 months currently - it was detected at his 20 week scan.

My advise - there is a Facebook group called CPAM rare but special. Join it, it has been invaluable for me.

My son was born asymptomatic - I was induced at my own request but I didn’t have to be. The Labour was fairly Straight forward other than the fact I had a pediatric surgeon and a NICU cot in the room with me. He was born screaming and after a quick assessment, my son was allowed to come straight to the ward with me. We were kept in for 48 hours and then discharged. He’s had no issues since and you would not know he didn’t have two normal lungs.

My son will be having a total lower right lobectomy next month - then hopefully I can move passed this CPAM experience.

Feel free to contact me if you have any other questions x

Thank you for your response, i havent seen this for a while. I am now 36 weeks pregnant, baby a bit on the small side but other than that cpam has not grown or caused any issues. I still remain anxious towards the end especially now with the covid situation.
May i ask where you are based, UK? The approach im getting is more of a wait and see. Couldnt bare the thought of going a day over my due date..pregnancy has been an awful time x

Manchester.

Yeah we did too, scans were recommended every 4 weeks but I begged for every three weeks which they begrudgingly agreed too.

Yes I agree, Es pregnancy was really not a happy time. I was anxious and pretty distraught for most of it.

Thanks again for your reply.
I am based in Liverpool. My scans are 2 weekly now mainly to monitor growth. Im just praying they offer me induction, or something instead of leaving me! Although i do understand what they mean when they say baby needs to stay as long as possible.
Did you push for induction? If not why was this offered to you?
X

I asked if it was an option for me as I have had quick labours in the past.

They said yes with no issue at all and basically just told me to choose a date from 37 weeks. I chose 38 weeks but I had a bleed at 36 weeks so they induced at 38 weeks.

Are you at Alder Hey then? I hear they are really good.

This is my first so not sure they will allow me to request induction but maybe its worth asking. Not even sure what the care plan is! Im currently under whiston, was under liverpool womens however they where happy that cpam was stable and not growing so could be discharged back to my normal provider. I have been told the baby will be under alder hey for ct scans etc when shes a bit older..i guess its the fear and anxiety of the unknown xx