Anyone know much about heart valve operations? My 6 year old needs one and i have no idea what goes on.......

[fairyfly]

Any info would be a massive help, cheers.

hi fairyfly, my dd had a routine VSD repair, so I cannot help. There are heartmums on mn, and hopefully one will come along soon with advice.

You can also try heartline.

Thankyou, he has had a baloon but it's not worked so this op will be a valve replacement and i would like to know how poorly he will be.

hello fairyfly,

My sister had this done at 15. They also tried the balloon procedure which didn't work, so she had to have open heart surgery.
She was weak rather than poorly for several weeks afterwards, but she recovered fairly quickly and without any complications. Her condiion was congenital so she was severly restricted in what she could do.
The operation gave her a new ease of life and now at 33 she is very active and healthy.
HTH, good luck and best wishes to you and your DS.

Hi fairyfly. My BIL had this done first when he was 17, and last week he had it replaced - he's 40. He was out within a week, and although a bit tired is doing really well. He's also really active and healthy - plays cricket, has 4 daughters and you'd never know he'd had a heart problem.

Good luck for your little one.

FF really sorry you are dealing with this - I had no idea.

look here - i have had some dealings with this organisation, they run a brilliant advice and support service, with many parents who have had children go through heart surgery running the advice line

Hi ff - I think we've spoken before? dd has problems with three of her valves among other things but hasn't yet had surgery on any of them. Which valve are they replacing and with an artificial or a homograft ? - it makes a difference to what happens afterwards. Pulmonary is usually a homograft, mitral a mechanical.

Thanyou! Tricuspid valve, glad this thread has nice happy endings.

Hi. For the people who posted they know who have had it done. Was the op serious? What i mean by that is did they spend time in intensive care afterwards and have open heart surgery with a huge scar?

I was all ready for one a few years ago and they decided to try drugs at teh last minute but I wish I'd had it.I have seen so many success stories at my cardiac unit and it really does change lives.Good luck xx

Thankyou. Weirdly he doesn't really need it to change his life as such as there is nothing wrong with him. Iyswm. Just the scan showed it's decline.

The symptoms can come on suddenly though.My heart has apparently been damaged for years but only got symptoms in my early 30's and it was so advanced sugery was thought too risky so great to get it done early.They do some with minimal invasion esp in teh young He will be flat out for a week or two although children do seem to recover quickly.

Thanks nod. Do you know if stitch is anything to do with it. He has begun to get them all the time on small gentle walks. I'm sorry you regret your decision. Hell of a decision to have to make. I hope you're not feeling to bad with it.

If anyone knows about the stitch thing it would be of great help. I am going to get off my mobile now and do some work.

I am a fellow heartmum myself but I really recommend heartline to ask for info about the specifics of the op. My son also has problems with 3 of his valves but hasn't had surgery on them yet (hopefully never!). As far as I am aware, it is on open heart procedure, so he will be in intensive care but if it is a straightforward recovery, it is usually only 24 hours, and home within a week (friends baby had a ross konno procedure and was home 6 days later!). There are talks of being able to replace valves via non invasive procedures, but I know that they won't consider it on children until they reach a certain weight and met certain criteria (there is a link on Heartline somewhere).

My ds underwent open heart surgery at 9 months old, came home 6 days post op and was pretty much back to normal within a few days of being home, just a bit more grumpy!

No idea about the stitch, maybe he is just getting puffed out?

Dh had his aortic root and valve replaced nearly 5 years ago. He's got the mechanical valve, which can sound very loud until you get used to it.

He was only in intensive care for one night, then moved to the high dependency unit. He came round 2 hours after the op, just as the anaesthetist was telling me that he'd keep dh sedated for 24 hours to see how he was doing! They didn't bother knocking him out again, as he was fine. He was home after about a week, which was much better than we'd expected because dh has other health problems that made this op more risky for him. The scarring has faded nicely. I know several other people that have had valve replacement surgery, and they were all home around a week after the op.

Dd has a slightly floppy mitral valve and aortic root dilation, and has palpitations/breathlessness, and is on beta blockers. She hasn't mentioned her ribs hurting before though.
If your ds isn't able to breathe deeply, eg, if he's tiring faster and taking shallow breaths because of the incompetent valve, stitch can come on because of that.

Thanks. It's really good to speak to people who know about it. I will contact heartline. Also i have decided to ring the hospital about the stitch. The consultant wanted me to note him of any breathlessness or if he turns blue and he would operate. If a stitch can mean shallow breathing then no harm in mentioning it. Didn't want to turn into a paranoid mother. I appreciate the posts and will probably use Mumsnet loads through his treatment.

Just wanted to say thanks blu. Lots of bumf arrived off them today which was really informative. Kiddies books too about going blue!

ff - I have a children's book called Operation Fix-it. It's a BHF one, not specific to valves but you're welcome to it. Mail me - jaxp 63 at hotmail dot com if you want it.

Thanks very much. Do you mind until i get the date of the op before i ask. I don't want to over do it with talking to him about it till we know when it is. Lovely offer.

That's fine ff - it's sitting safely on my bookshelf

Cheers x

Just bumping this to see if i can find a little one who had it done. Cheers.