is 5% mortality rate a big risk for an operation?

[hackneyzoo]

Is this a high mortality rate for an operation on a child?

[Badders123]

It means that out of 100 people operated, on 5 will die.
I suppose it all depends on several factors...current quality of life, prognosis without operation....

[hackneyzoo]

Thanks Badders. I get what it means, just wandering if that's particularly high or not in the grand scheme of things. Just trying to keep a lid on my rising anxiety over an op DS has to have next week and was feeling pretty ok about it until he mentioned the 5% mortality rate for this type of op. I think you are right, there are so many other factors involved in working it out and they have to make all outcomes clear.

[Badders123]

It's tricky.
My mum needs an op (a repeat of one she had 3 years ago which has failed) but her surgeon stated a 2% mortality rate which she feels is too high.
However...she is 70. Her condition is not really affecting her day to day now, and if it does and she ends up as an emergency admissision then she will have no choice and will have to have the op.
The dr we saw was very good and made the point that an elective surgery is always preferable to emergency surgery.
Every op had a mortality risk, even my youngest son's adenotonsilectomy (although I believe the biggest risk is from the GA?)

[Monkeymonstermum]

I guess it totally depends on the circumstances,
eg what are the risks of not doing the operation?
What success rate does this surgeon have?
How often does the surgeon do the operation? I believe there is evidence that surgeons who do an op more frequently have better success rates than someone who only does a certain procedure once in a while.
Good luck. Xxx

[hackneyzoo]

Thanks Badders. DS needs the op, there is no choice so that's the decision taken out of our hands. I've lost count of GAs he's had but he always comes round well and doesn't have any adverse reactions. He's having open heart surgery which I guess carries risks in itself. 5% just sounds high to me. The surgeon did say it was the mortality rate for 'this type of operation', so maybe that's standard for OHS. I wish I'd asked more at the time, but didn't really process what he was saying until afterwards.
Hope your Mum's condition stays stable.

[Knockmesideways]

Hi Hackneyzoo,

I didn't want to read and run although I have no idea whether 5% is high or not. But I think you need to put the 5% figure out of your head.

Our DS was born with a congenital heart defect. This wasn't spotted until he was almost two weeks old. We were rushed to hospital with him as his body was battling to keep either his respiratory or his digestive system going - he couldn't do both so he wasn't feeding because his heart couldn't pump enough oxygen round to keep his lungs and his digestion going at the same time.

We were told he needed an emergency balloon angioplasty - where they put a small balloon on a catheter and 'pop' open an obstructed valve in the heart or clear an obstruction (in his case it was a malformed valve which couldn't open and shut properly)

We were told that there was a chance of the angioplasty triggering a heart attack and he would then probably die on the operating table as he was so weak.

But, as his fantastic surgeon explained, they had to tell us that. It was a possible outcome so they had to prepare us for that. Without the procedure though our DS would definitely be dead within a month through starvation or a heart attack. That was the outcome - take a chance or definite death. There's no contest with those scenarios really is there?

It is so hard when they are in the theatre - we kissed DS goodbye and didn't know if it was a 'see you soon' or 'you gave us the best two weeks of our lives' kiss. We sat in the cafeteria waiting for the mobile to ring to tell us DS was out of surgery and it was only when we saw his surgeon with a huge grin on his face that we actually felt the weight lift.

DS is now coming up for 9 years old. He will probably need another angioplasty at least once more in his life, possibly more and possibly open heart surgery. But he runs about like a maniac and enjoys his life - to see him you'd never spot something was wrong.

Every operation brings a risk - but you need to focus on the fact that 95% of the operations that your DC is going to go through are successful to some degree or other.

Don't be afraid to contact the surgical team to talk to someone about your fears - they can't make guarantees but they can give you more information which may help you switch the focus. At our son's hospital there were nurses who acted as the bridge between the surgeon and the parents so it's worth asking if your hospital is the same - our son's nurse answers any questions we may have like what sports can he do, can he fly to certain places on holiday etc. Questions our GP may not really have the answers to as he's not a specialist in heart defects.

I hope everything goes well. It is a huge worry, especially as you feel so helpless, but try to think what life would be like without the operation and concentrate on how it could be better with it.

[Badders123]

Gosh how worrying for you!
I would imagine that OHS carries a higher risk than an appendectomy, for example.
It's good he is used to GAs and recovers well....that's Positive.
Sadly we live in a litigious age, and Drs have to spell out EVERYTHING that could conceivably go wrong (even if that particular surgeon has never had that complication)
Best of luck to your son and I hope he recovers well X

[Badders123]

[Naoko]

You also have to consider that that 5% figure isn't, on its own, particularly meaningful. If you broke it down further it might tell you more - for example, if you were to look at the mortality rate for young, otherwise healthy patients vs. elderly ones with multiple underlying conditions, those numbers might be very different indeed even though they average out to 5%. I can understand it's scary, though, and I wish you and your DS good luck and fast recovery.

[Knockmesideways]

Oh, just spotted yours is heart related too. Our DS has aortic stenosis because of aortic coarctation, a bicuspid aortic valve and a mitral valve regurgitation.

[Badders123]

Absolutely!
Most OHS are on people like my mum...old, complicated health issues, on many medications, not very fit....

[hackneyzoo]

Thanks for reassuring me people! It is appreciated.
Knockmesideways, glad your DS is doing well now. The surgeon we have is one of the leading in his field and he operated on DS last year and I have total faith in him. We have been given a liason nurse too and she's been really helpful answering my questions. He doesn't have a congenital heart problem, but has a secondary benign tumour growing around his aorta which needs to come out. They won't really know how complicated the removal will be until they get in there and there is the risk he may have to go on bypass. But htese are all things that the surgeon deals with everyday. DS is 7 and the surgeon operates on tiny babies hearts, so I feel DS is safe in his hands,
You are right about focusing on the 95%, and there is no other choice, so we've got to get on with it. Its saying goodbye to him when he goes into surgery and waiting that I am dreading. He's been in and out of hopsital since he was little with problems relating to a tumour, I just feel even more anxious than usual this time.

[Backingvocals]

In a way it's really impossible for us to calculate what that means for us personally, isn't it. And we don't have any experience of assessing risk through numbers - it's not as if every time you cross the road a figure comes up saying "0.27pc" chance of death or every time you eat something you shouldn't a figure comes up saying "1% chance of shortening your life by 1 year".

We just don't manage ourselves like this and so in a funny way it's just really unhelpful to be given these numbers although a) they are doing it in the spirit of disclosure and b) if it was really high it would be useful information.

These low but significant numbers are hard to know what to do with. Agree that out of context it's probably difficult to assess anyway - it probably breaks down further with information about underlying health/age etc.

I think you should ask for a further conversation about this. if they say all the operations he's already had are in the same risk bracket you'd probably feel differently about it.