Pulmonary Stenosis

[jdln]

Hello, I'm new on here and looking for some advice/ personal experiences.

I gave birth in January 2020, after a quick birth my little one was taken to the high dependency ward due to his observations showing he didn't have enough oxygen in his blood, he was struggling to breath properly for himself and wasnt feeding properly. After numerous tests, consultations and predictions my 2 month old has been diagnosed with a congenital heart condition- mild Pulmonary Stenosis. We have been told that as it is mild they will monitor it but take no further action unless it becomes moderate/severe. Does anyone on here have the same thing? Or know anyone diagnosed with this? I guess I would like to know your stories.

[Lyndaloo494]

Hi There. Congratulations. This must be a worry for you. I was born with this exact same congenital heart defect. At age 4 years old, I had open heart surgery to deal with the pulmanory valve. I am now age 47 and had absoltely no issues until recently when it was discovered I had leaking valve and am now weeks away from further heart surgery to replace the pulmonary valve. I hope this gives you some encouragement and I am sure your baby will be closely monitored. X

[jdln in reply to Lyndaloo494]

Thank you yes it is such a worry for us especially not knowing what the future holds for him. We have been told that if he needs to have surgery it will be key hole. Its reassuring to hear that yours caused no problems for so many years. Has it ever had an impact on your life and how you have lived it? I'm sorry to hear that, but hope everything goes well!

[Lyndaloo494 in reply to jdln]

Hi, it has had absoltely no impact ever. I have lived a normal healthy life. I only have good memories of hospital visits as a child as they made such a fuss of me. I had annual check ups until age 15, then I was discharged. I have been told back then that this was normal, but these days they would continue to see you throughout adult life. I have no symptoms of my current condition but luckily it's been picked up on while I am still in good health. That will be great if anything needed for your baby is only keyhole, and things have progressed hugely since my op 43 years ago. I'm sure it will all be fine x

[jdln in reply to Lyndaloo494]

That is great to hear and very reassuring! Thank you so much