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

Come on dont be so hard on yourself, we have all made a fool of ourselves at one point in time.
The consultant will probably explain everything to you next week, in the meantime spoil yourself with a bit of TLC.

I'm sure its not the first, or the last time that she'll have to talk someone down who has scared themselves witless, and she won't hold it against you.

And, ime, consultants tend to be overworried if anything, so she'd have def prepared you previously if there was anything to worry about

Thanks so much for posting

Have spent the afternoon with friends who were very good at calming my fears, and DH called to say he'd trawled the BMJ and came across an article (albeit from 1994, but I suspect the outcomes may be even be better now with improvements to surgical techniques and aftercare) which found that the optimum time for surgery was 18 months - DS had his at 2 years, which does indicate a good life expectancy. I guess I'll just accept the knuckle rap from her next week, and Dibbler, I'm sure you're right - she would have prepared us by now.

I don't know how on earth anyone lives with worse than this. It must be truly, truly hideous

What condition is it?

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

I think you should stick with your doctors. I have a heart condition v serious and when I googled I was terrified. Things change and individuals progress differently. I was diagnosed at 31 and am 46 next friday. I have had the condition since birth but assymptomatic until 31. Please don't keep googling. Do you know anyone with a child with this that you can talk to?

never ever google.

with dh heart condition, according to google his life expentancy is 5yrs. after transplant, 10years. but doesnt factor in medical advances. know many many people who are well past the 10year mark, so trying to push thoughts aside.

and yes consultants tend to paint the grimmest picture IME. Everyone i've met has prepared us for the worst.

BTW my ds was scanned at 14 which is prime time for this to show in children of people like me and he was clear but he will be tested again next year at 18 and I know how you feel. How does his life seem day to day Happy and positive has really helped me x

I know, I really really shouldn't have googled - I wasn't even looking for articles or information on life expectancy, just wanted general information before his checkup because tbh it's been so long since I even thought about it.

I don't know anyone with this condition - would that help, do you think?

Misdee - I know this sounds utterly cliched, but how do you cope both individually and as a family?

I think meeting people who are positive and have had good outcomes can really help.

i honestly honestly dont know how we cope. dh is now 4 years past transplant, we are expecting baby # 6 (third once since transplant) and just take life as it comes. at the end of the day he could get hit by a bus at any point, w3e cant stop life because of what may happen. deal with it as it does happen. he is back at work full time, and aside from the scars and the medication in the cupboads, he is fine.

Hello misdee glad he is doing well . I think the live each day philosophy is key. I try to do that and it is the thing that has transformed my life if I dare to look too far ahead I get so stressed that my life is awful anyway! Medicine progresses all the time and you never know what they will discover next.

Noddy - did you know about your condition as a child? How did you learn about your prognosis? Do you feel there was anything that could have been done differently for the better?

Misdee - wow, 6 children!! Congratulations on your latest pregnancy . Dh is taking this attitude that we deal with things as they happen - which hopefully they won't. Did it take you a while to get to this way of thinking, or is this your natural approach do you think?

No I had no idea. I fell ill late teens with a kidney problem and needed a transplant. At that time my blood pressure was bad and they blamed it on the kidneys. Years later I started feeling breathless and was diagnosed with HOCM which if you googled it would scare the life out of you. Doctors think I have always had it but only became symptomatic late. Nothing could have been done for me sadly although now I would say I keep up to date on medical advances but not obsessive iykwim. If I think something might help me in terms of diet supplements or surgery etc I ask.

Will pop back - DS just come in

OP - my dd has a CHD. It has never caused her problems and is unlikely to ever do so but two weeks ago when she started having chest pain and mil helpfully pointed out an irregularity in her pulse I freaked, of course I did!
Heart stuff - even things like dd's (which her scary woman consultant decsribed today as 'minor' - huh - you tell me it's minor when it's your precious child!) is scary. I am fine about dd nearly all of the time and then if I 'fall' in to it as it were, it's like falling in to a huge scary hole full of unknown horror. The anxiety is horrible and no I don't know how people cope with worse. Thankfully dd's pain has been diagnosed as musculo-skeletal and her echo was absolutely as before so feeling much better and I hope you get the same reassurance next week. If they look fine and they act fine then chances are they ARE fine.

MIsdee - congratluations on number 6 - how lovely for you all!

Northern thats a great attitude. I completely understand that feeling that if you 'go there' it is all consuming and swamps every part of you. Hope your dd continues to be well x

Northernlurker - you've hit the nail on the head. It is absolutely terrifying when I stop and think about it, which is why I don't stop and think about it - it's just there, in the background and apart from the odd Scout/rugby/school form where I have to write about it, it's not something that is at the forefront of everything I do. The head in sand approach works very well for me!

When I am faced with something in black and white, and I have to think about it, the enormity of it hits me, and I think about what it could mean for him long term in terms of his family life, choice of career, and so on. Hopefully he will be OK - not sure I'll be any good to man nor beast until next Thursday's appointment (which is on his birthday - eek) is over.

Oh Maisie I do feel for you. My dd has a complex heart condition that does come with a reduced life expectancy. It must have been a shock for you to read that. But I do think that the old adage is true 'a little information can be a dangerous thing'. Your consultant and your dh are absolutely right - techniques and drugs are improving day on day and whatever the life expectancy of a condition was yesterday it will be even better tomorrow. If that makes sense. If there was any concern about your son long term then they'd be telling you.

I agree with Noddy that meeting positive people can work wonders but it's true that if you search for fellow 'sufferers' for want of a better word, that you get the cases that aren't doing so well and it can compound your worry.

Good luck with your appointment next week- you have PAT - pre appointment tension You'll feel better next week I promise.

NorthernLurker - glad all is well

Oh Saggar, I'm so so sorry to hear about your DD. Do you mind me asking - was that explained to you at the outset? How have you coped knowing this? Was there anything that helped (or didn't help)?

Don't be sorry Maisie. She's not sorry for herself.

dd was extremely sick in the beginning and initially everyday was a bonus so it didn't need explaining. She's done better and continues to do better than they ever thought which is testament to improving treatments and medication. She lives a pretty normal life so I really don't think about it often (just when I have PAT). She's 18, they initially thought she'd need transplanting but there's no sign of her needing it. They've even said she'll probably cope with a pregnancy so things are looking brighter than they've ever been.

Not sure of your area but could Heartlink be any help? My nephew has a heart condition and I know that SIL and BIL find it a great support. (He is a bouncing eleven year old BTW).

is she really 18 now sagger? blimey!!

I know misdee. I'm the mother of grown ups.