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Heart valve defects - anyone else here?

(8 Posts)
Mmmmcoffee Thu 24-Sep-09 11:34:42

My DD was born with pulmonary stenosis (a narrow heart valve) and had balloon surgery when she was 3 months old; now she's 11 and has mild pulmonary stenosis and moderate pulmonary insufficiency.

She's now 11, robust and healthy, but hasn't got terrific stamina. The docs say she'll be fine but "will never be in the olympics", and might need a valve transplant in the future if her heart enlarges too much.

Has anyone else got a child with a similar problem? And do they try to use it to get out of PE too? grin

winestein Thu 24-Sep-09 11:39:58

No, but it sounds remarkably like one of the heart issues my partner was born with. He had a Ross procedure about 10 years ago, and the only thing that he has been told not to do afterwards was lift heavy weights.

In general he just takes things at his own pace. I remember talking to his mum about it and she said she was told that she didn't need to stop him doing anything - he would know his own limits.

I know he never dodged PE on the back of it though - other than when he was recovering from bypass surgery!

Hope you get someone to chat to about children soon (partner is 42 so he hasn't been a child for a while - physically, anyway!!)

saggarmakersbottomknocker Thu 24-Sep-09 19:43:57

My dd has issues with 3 of her valves (among other 'plumbing' anomalies). Her pulmonary valve has a moderate leak and her pulmonary artery is narrow; this was ballooned again in the Spring.

My dd doesn't do much PE - tis a teenage girl thing I think. I don't push it TBH, she self regulates and will exert herself when it suits. We are off for a treadmill test in a couple of weeks so will see the true nature of her fitness hmm I sometimes think that her lack of stamina is a straightforward case of her being unfit but that's difficult to test as I can hardly send her out for a jog smile

Mmmmcoffee Thu 24-Sep-09 21:23:52

DD has had regular ECGs and ultrasounds, she's thrilled they told her last year that she can skip this year but has to have a 'full work-up' in London next year - they mentioned an MRI and stress test. hmm wonder what that is?

saggarmakersbottomknocker Thu 24-Sep-09 22:39:26

Stress test is the exercise tolerance/treadmill test coffee. dd has had a couple before - basically they put them on the treadmill on a slow walk and gradually increase the speed and the incline. They have them all wired up; sats, ecg etc and see how long they can do. dd also had an MRI last year which she didn't like very much as it took an age and she's not too good in enclosed spaces.

Mmmmcoffee Fri 25-Sep-09 13:51:04

Thanks, good to know. At least we get a couple of days in London - whoo shopping! grin

saggarmakersbottomknocker Fri 25-Sep-09 14:39:44

Oh yes - there has to be some benefit smile

Lavenhamluvvie Fri 25-Sep-09 14:58:39

My son has pulmonary atresia and had a surgery when he was born to open the blocked pulmonary valve which was stopping blood circulating to the lungs. He's now 7 and apart from similar surgery to your daughter's (widening of the artery) he hasn't had to have anything further and sees his consultant once a year. However, last year's visit we were told that Tom would probably need a new replacement valve when he was about 10. But from what I gather it's a very straighforward operation not requiring him being "opened up" as the catheters do the job. He too does not struggle particularly but he does go blue when cold. Apparently the valves are often taken from pigs (!) but valves are also something that can be donated as organ donors so maybe something to promote. wish you all the best.

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