Any info on cardiac tumours?

[Laura82]

Hi all, I usually just follow the threads but after being diagnosed with GD and having an extra scan, they found a tumour in one of my little girls heart chanbers- I am 27 weeks and have to wait until 11th May to see the specialist from StThomas'. No idea what to think so any advice or experience would be lovely.
Thank you

 

[beckyboo1]

Hi one of the feb mummies had a baby with a tumour- I'm in touch with her will see if she'll pop back on to answer your question x

 

[MrsT2711]

Hi Laura.

Firstly congratulations on your pregnancy but sorry to hear this but I can 1 million percent empathise with how your feeling right now.

it's a very long story and ill try to summarise. I had a mw apt at 32 wks and picked up irregular heartbeat and sent to mau. They scanned me and found the tumour and talked of c section there and then but no neonatal cots available. I was then transferred to liverpool (I'm from stoke) where after a scan by a consultant there they decided to keep him in a little longer. After weekly scans at Liverpool and twice weekly monitoring at my local hospital I deliver Dexter at 38+5 by c section (because of the irregular heart beat they said he'd be hard to monitor and also didn't want to stress the heart out) . He came out absolutely perfect and didn't need to be looked at by any specialist for a week. But did have a scan day after birth and was refferred to alderhey children's hospital.
Dexter had a mass the size of a golf ball in his right atrium and it was also attached to his coronary artery..... after mri scans and echo scans he ended up having open heart surgery at alderhey at 4 weeks old. Dexter recovered remarkably well from all of this and is doing amazing now at 10 weeks!
We found out 4 days post op It was a a strawberry birthmark (hemangioma) in the heart which is extremely rare with only 8 known cases in the world.

Now... Some of that stuff I've told you because the fact you haven't been refferred to a hospital and kept in straight away is a really positive sign!

Also and this is totally up to you..... I can tell you things I was told the mass could be but some aren't nice and can be scary when in fact we are living proof that this can be something all though very scary at the time, totally fixable and hopefully never return.

I really struggled when we found out as I had no one to talk to with any experience of it.... so if after reading that,you want to know more or just have support while going through the next 13 weeks then pls don't hesitate to get in touch.... ask questions and maybe we can swap Facebook or something because as becky says I don't really come on here anymore.... newborns take up a lot of your time lol

Take care and most of all ENJOY being pregnant which i know might be hard now but i wished the end of my pregnancy away because of everything and really regret it XxxxX

 

[Laura82]

Thanks for sharing your experience with me, that is kind of reassuring to hear that it has all ended well, and as you say, the hospital did say that if it was growing in a different chamber they would have sent me to at Thomas' there and then so I have to stay positive. It sounds like the first few weeks were hectic but as long as the problem is resolved that's the most important thing.
I'm gonna try not to think about things now until I see the specialist in a week.
Thanks again
Laura

 

[MrsT2711]

Good luck xx