Pulmonary Stenosis

[krl198]

I am 20 weeks pregnant and our baby has just been diagnosed with pulmonary stenosis which we have been told is moderate to severe, but more on the severe side, by a paediatric cardiologist. The baby will need treatment at birth, either balloon surgery or open heart surgery. It may not survive until birth if it suffers heart failure as a result of the condition. I have been told that PS diagnosed before 24 weeks has a 60-70% survival rate. I have also been told it can often be associated with chromosomal abnormalities but have opted not to have an amniocentesis test.

Does anyone have any experience of this heart condition and can offer any advice and further information?

Many thanks.

 

[going_crazy]

Hi. My LO has severe pulmonary stenosis as well as other heart defects (not related to any chromosonal abnormality). It wasn't picked up until she was 1 day old. She had a balloon septostomy at 2 days old and a shunt put in at 4 days old........ We are now waiting for open heart surgery.

No disrespect to this forum (I love BnB ) but feel free to pop over to https://www.heartline.org.uk/forums/index.php and have a look - that's where lots of other heart mummies are, and you will find tonnes of support there.

Feel free to pm me at any time and I'll try and help xxxxx

 

[krl198]

Thanks very much for your response. I will have a look at the forum you recommended now.

Really hope all goes well with your LO. We have been told that our baby will need balloon surgery and possibly open heart surgery at birth too. It's a lot to take in at the moment. Must be a very tough time for you xx

 

[going_crazy]

I don't know what it feels like to be diagnosed antenatally, but when we found out after birth our world kind of fell apart as it was like taking a huge leap into the unknown. We also had loads of different emotions to deal with which was hard too.

If you've got any questions about the balloon septostomy I'll help, but have a look at Heartline for other info, as my LO hasn't had open heart yet, but lots of mummies have been through it and can offer you lots of support (my username over there is sarahbo)

If you are already seeing a peadiactric cardiologist then you and your baby are in very good hands. Are you in the UK?

xxxx

 

[krl198]

Thanks, I am waiting for the registration to complete and will have a read through the info on there tomorrow. We are originally from the UK but have been living in Hong Kong for the last 3 years and are having the baby out here. We've had private and public hospital scans and just seen a paediatric cardiologist today. At the moment, we're very worried about the baby actually making it to birth as there is a risk of heart failure before birth in which case nothing can be done. I'm sure I will have some questions about the balloon procedure once I have done some more research on it.

A friend's daughter had open heart surgery at 2 days old for a heart condition that was only discovered at birth. She recovered very quickly and didn't even have a scar from it 2 days later. She is now 10 and has been given the all clear at every check up. They are very resilient but it is so worrying as it is major surgery...

 

[going_crazy]

There is a section for pregnant mums on heartline, so you may find some info helpful, if not, someone can point you in the right direction!
Hope things go smoothly for you xxxx