Pulmonary stenosis

[Jaffacake007]

Hi

My 20 month old was diagnosed with this a few months ago after a heart echo... we went for another appointment today at a larger, children's hospital. This showed her stenosis was worse, now considered 'severe' rather than moderate.

They are planning on doing a balloon catheterisation next week to open her pulmonary valve.

Does anyone have any experiences of thus please? How are your little ones now? I keep being told not to worry, but I find often that makes me worry more!!

Hi there, my son didn’t have pulmonary stenosis but he did have a similar condition, which required a balloon catheter procedure at a week old. They went in through a vein in his leg. It was the scariest afternoon of my life and prob always will be but I was heartened to learn that for the hospital where he had it done that is considered a ‘basic’ operation (!!) and no one really batted an eyelid. The staff were amazing and his recovery super quick and for my child the outcome has been amazing. I wish you and your family all the best, I know it’s scary, but they are AMAZING people these doctors and nurses and will take good care of your child ( and you). Just keep a list of questions you have so you can ask them, no matter how mad they might seem- you have to get those thoughts out in to the light so the staff can tell you they are nutty thoughts! Doing that helped me a lot, I’m sure I drove them mad, but it meant I didn’t have any insane thinking keeping me awake at night Big hugs x

@Bluebleu thank you so much for your reply really glad to hear everything went well for your baby. I think it's freaked me out more because they found a murmur quite 'late' by accident when checking her over for something else. And now it seems to have jumped from moderate to severe within 3 months. The consultant said the same as you, that they see it as really basic and should all be fine... I think you just fear 'heart procedure' and panic!

I've started writing my list of questions now

I hear you- it’s not a nice surprise to have. Just keep asking the questions and try to stay off Google! Xx