Pulmonary Stenosis

**No.5** · February 22nd, 2013, 06:02 PM

DD went for her first peads appt today at the hospital.

She was 5 months old yesterday and weighs 4.6kg so still on 3rd centile which is fine, he wasn't worried with her weight at all.

When he listened to her heart however he was surprised at how loud her heart murmur is (it could only JUST be heard on the day she was discharged from SCN and was never picked up before then).

He has sent a referral off to the Mater peads cardiologist querying pulmonary stenosis. He sent her for a chest x-ray and an ECG today just to make sure she was ok enough to wait for the tertiary appointment at Mater. He said he can't see anything MAJOR in either but to keep an eye on her and to follow up with the Mater if haven't heard anything in a couple of weeks. Also have to go back to him in 2 months so he can check on her.

I don't know where I'm going with this post. Does anything know anything? Google is annoying me.

**Little Chicken** · February 22nd, 2013, 06:55 PM

This must be very worrying for you, hopefully it is nothing major. This fact sheet has a great explanation about what pulmonary stenosis is and how to fix it.

http://www.rch.org.au/cardiology/hea...nary_Stenosis/

**No.5** · February 22nd, 2013, 07:05 PM

Thanks LC will have a look

I wasn't so bad until I realised how concerned he was about it.

**~Raven~** · February 23rd, 2013, 07:31 AM

My niece has pulmonary stenosis which they picked up almost immediately after she was born. She had her tightened artery stretched via balloon catheter through the groin at 2 (I think she was 2) and will need to have it done several times as she grows.

She is a very strong and robust little girl who leads a very normal and active life

It hasn't slowed her down at all!

**No.5** · February 23rd, 2013, 07:44 AM

Thank you Raven

Glad your niece is doing so great and it doesn't impact her

**Catastrophic** · February 23rd, 2013, 12:09 PM

no advice, just wanted to offer my hugs xox

**No.5** · February 23rd, 2013, 12:11 PM

Thanks Cat.

This is a whole new ball game. Just want to get the appt over with so we know what to expect.

**MistyFying** · February 23rd, 2013, 12:45 PM

My son had pulmonary stenosis. His required surgery and the insertion of some synthetic material to open the artery. The balloon through the groin artery is far less invasive if intervention is required and if you have the option. Hope it all goes well for you.

**Cassius2** · February 23rd, 2013, 03:20 PM

ah crap Schonell

Absolutely no advice, just loads of love and a time machine to bring that appt closer. the waiting must be craptacular.

**No.5** · February 23rd, 2013, 06:37 PM

Thanks MF, is all well now with your DS? How old was he when it was picked up?

Thanks Cassius, the wait is horrible. I just want it over with so I know.

**MistyFying** · February 23rd, 2013, 09:04 PM

His was picked up at birth and he had surgery at 3 days old. His cardiologist is very happy with the way his synthetic patch has worked, and his artery has grown with his body and compensated for the patch. He's now 10 and still in good health

**Footsteps** · February 23rd, 2013, 11:40 PM

I had a bad murmur as a baby....i was premmy. It apparently could be heard slightly when i had my op a couple of years ago but they did a ECG and weren't to worried. Hope you get some answers for her. huge huge hugs x

**No.5** · February 24th, 2013, 06:09 AM

Glad all has been well MF.

Thank you Footsteps. Hope you're well.

**No.5** · April 16th, 2013, 07:29 PM

Thought I'd update this thread.

Wow can't believe it's only been 2 months since that post, seems so much longer ago!

DD had her appt with the specialist last week.

She has a 10mm hole in her ASD as well as the stenosis which has an obstruction of 20. If the hole doesn't close on its own, they will close it at pre-school age. The stenosis they said that they will operate once the obstruction is 40. So she goes back in 6 months to see what the hole and stenosis are doing and I guess we'll go from there..

**Catastrophic** · April 16th, 2013, 08:28 PM

Not the news you were hoping for xoxox but at least have some answers. xoxox I hope it closes up by next aopointment!

**Cassius2** · April 17th, 2013, 09:50 AM

wow. i guess that is quite a bit of information to process. kind of created more questions than answers really. but such a relief that it was all picked up in the first place.

many

how are you feeling about it all? was the specialist ok and able to kind of explain it all etc?

**No.5** · April 17th, 2013, 06:27 PM

Thanks Cat, me too

Cass it's all much the same really, we just know the extent of the problems now. It's still all a wait and see thing. I feel like the appt was a waste really. I'm seeing the pead Friday so will chat with him more about it.