About heart disease, or am I being stupid?

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My eldest son was born six weeks prem with a soft heart murmur which was looked at three monthly by Birmingham Children's hospital every three months until he was 12 months old. He was born in August 2000. He was discharged with no further follow up checks in 2001.

I read an article about sporty young adults who have died of undiagnosed heart conditions (my ds1 is very sporty) and I feel a bit alarmed. Should I ask the GP about a test - which I gather is available, but only privately?

If you are worried seek advice. I've had a heart murmur for my whole life as has my mum. I have had some heart problems but they were caused by a virus, not the murmur, my mum has never had any problems. There is no harm in seeking reassurance.

Thanks for reply! At the time (and I may be wrong, I have no medical training!) I understood the heart murmur to be caused by a small hole in the heart due to immaturity of development and they considered it "closed up". Does that make sense? I will see the GP, but I am finding myself anxious, possibly unnecessarily, as a child (15) died locally recently to SADS.

the key is that these people have died of un diagnosed conditions. your ds had a heart murmer that the medics were aware if but no longer concerned. if there was any risk he would be being monitored. do speak to your gp to allay your fears but im sure all is well . x

My friend's Dd was born with the same, she has no problems at all but I can totally understand why you might be worried. Please go and speak to someone and get advice to put your mind at rest though. I'mnot a medic either and only have my own experience to offer which is limited!!

I wouldn't be too concerned. Heart murmurs in babies are not uncommon, and they usually right themselves. Those poor teenagers that drop down dead suddenly usually have undiagnosed arrhythmias or underlying, undetected heart conditions. Talk to your GP for advice, they would be happy to talk to you about it.

Thank you les mis, I think I will speak to GP (he is fab) but I didn't want to look like a loon! DS1 is asthmatic, but otherwise very healthy (apparently!)

And no, you're not being stupid. Just concerned.

Oh - cross posts! Thanks everyone!

I feel very confident that your son was only discharged because the murmur had resolved. My dd2 was diagnosed with a murmur at 6 weeks. Investigations showed this was caused by a narrowing of the pulmonary valve. She has always remained perfectly well but unlike the small holes - was it a VSD? - this is a defect which won't ever go away. The main risk with minor defects like that is the vulnerability to infection in the heart valve rather than it interfering with rhythm. Nevertheless she has been followed up regularly and will probably be discharged when she hits 16. By all means speak to the GP but I'm sure there's nothing to be concerned about.

IIRC, sometimes people with a history of heart valve problems have to take prophylactic antibiotics when having dental work done.

Thank you northernlurker and RandomNPC - I think I will make an appointment tomorrow to ask about it - I have a flu jab booked anyway, so I'll tack it on!

It may be worth discussing the type of sports that are suitable for your DS in the context of his health situation.

It may be that they say he doesn't need to avoid any particular sports, if so that's great. However, there may be prolonged exertion like running / racing longer distances as he gets older, that they suggest increases risk or may be better for him to steer clear of. A chap at my athletics club was diagnosed with a heart condition, so now he cannot race on the track etc so took up cycling instead, which was suggested as a reduced risk alternative

Maybe a useful discussion to have. Great that he likes sport!

Heart murmurs are very common, it just means a heart doesn't sound 'right', they are followed up as they may be a sign of other abnomalities and most just resolve themselves and children are then discharged.

The athletes who drop dead doing sport have 'hypertrophic cardiomyopathy' - their left ventricle walls are thickened and this can lead to cardiac arrest.

BUT this shows up on an echo. I assume the hospital did ECGs and Echos (ultrasound) and everything was normal?

If you are worried you could ask your GP to refer you back to a cardiologist or you could pay for a private echo wich would be £150 - £200 including a report.

OP, have you heard of CRY?

www.c-r-y.org.uk/cardiac-screening/

They offer screening events for people 14-35, and it looks to be straight forward enough to book a place if there is a screening being held near you.

I've heard very good things about them from people I've worked with.

If it's not the kind of thing you were looking for, there's no harm in seeing your GP for your own/your child's peace of mind. They will be able to clarify things for you, at the very least.

I was just going to mention CRY - well worth looking at for additional information.