Did a stupid thing and googled my son's heart condition - got information I really didn't want and now have an unhappy consultant

[Maisiethemorningsidecat]

Don't really know what I'm looking for from this, but please be gentle with me....and apologies, it's a long one

DS1 had heart surgery when he was 2, and although I knew he had to have it I had always been under the impression that it would have the surgery, would then have regular checkups and may or may not need further surgery at some point. No big deal (compared to many others).

He's now 14, and has a 'big' checkup next week - they do this at puberty as this is when the condition may reoccur. I've been quite relaxed about it - he seems fit and healthy - so stupidly googled for information on his condition. Went to the usual reputable sites, and got horrendous info about shortened life expectancy.

At that point I completely lost it and started to faint. Came to, and was in a terrible state. Didn't know what to do, phoned DH who did his best to calm me down, and then I phoned the unit to see if there was anyone I could speak to next week - but was put through to his consultant in floods of tears

She said (through gritted teeth)that there was nothing about DS that would suggest a shortened life and that she would have told me if there had been, asked me what articles I'd read and explained about studies etc - all of which I bloody know about and should have factored into my thinking.

Now feel very stupid for looking, but more stupid for not asking for this information years ago, and scared witless about being told more at the appt next week - perhaps she didn't want to give me the full picture over the phone. Also worried about getting a lecture from a very scary woman for doing something that I know was stupid

I can't think straight today

Thanks for the link Mammonite We're in the Lothians, and attend the Sick Children's Hospital in Edinburgh - I think I might ask about support groups, although will talk to the consultant first to see what she thinks.

Sagger - that all sounds very positive. Hope it all stays that way for a long time

Maisie - I post on Heartline and they are a fabulous group of parents, very supportive especially if you are facing surgery. Just to say though that as with the nature of any support group you do get the severe cases of any given condition and although your child may have the same condition it doesn't necessarily mean the same outcomes.

Good luck next week.

Thanks Saggar - and to everyone who has taken the time to post here. You've really lifted my spirits and helped to put everything in perspective

I hope the appointment goes/went well and there's no re-narrowing.

I think I've found what you might have been looking at - was it patient.co.uk? Some v strange figures there, which give a life expectancy following late correction of considerably less than that if totally uncorrected, and that doesn't gel with the 20-yr survival for correction at either under or over 14. . Makes no sense and looks like they've just found some references and bunged them in.

Far better to get proper info from a qualified, experienced cardiologist!

I have a heart condition (different one), hence my interest, and both surgery and medicine have advanced an amazing amount since I was born in the 70s and I trust they will continue to do so. Need to keep people like me causing trouble for a long time yet!

You might want to look at Brighthearts which covers teenagers.

Aortic coarctation (had surgery for that) and also has a bicuspid aortic valve

Well I was born with both these conditions, had surgery at 17 months (coarctation) and 7 years (valve) to correct - and I'm 50 tomorrow!! What a thought (just drinking wine here and wondering where my 40s went - but hey, I'd better not complain!)

Just thought that might add to the general consensus.. and good luck!

dd is a memeber of Brighthearts. She went on a trip to Portugal with them a couple of years ago. The photos are on the gallery page on Auntie's link. They had a fab time

Good luck tomorrow.

How did it go Maisie?

Maisie - we're in the Lothians too, and my DS2 has the same conditions as yours. Is your consultant Dr Burns by any chance? Anyway, DS2 is only 15 months and was operated on after he went into heart failure at ten days. Scary time.
I have also seen the data re shortened life expectancy etc, but you have to bear in mind that many coarcts in the past were not picked up until children were much older, therefore having had a lot of damage done to their left ventricle.
Obviously, there is a possibility it will reoccur and I think the anxiety around puberty is that the aorta doesn't grow as well as it should. Dr Burns is a terrifying woman but she does know her stuff - she's always told us that the odds are the DS2 might need further surgery but at the moment to tread him as normally as we can.
My heart (no pun intended) totally goes out to you - we'll be where you are in 12 year time. Hope the appt went well.

OK you did something stupid - don't we all?

Your child's life will not be any longer or shorter because you used google - it will just turn you gray.

Before anyone else takes their child's pulse and worries that it is irregular - that is normal in childhood.