to be angry about a 5 month wait to have a 2yr old's hurt murmur checked??

[seahorseshavecrackedit]

My toddler's GP picked up a heart murmur when checking out my 2 year old and referred him to be seen by a specialist in the hospital. We've just been sent the appointment and it's not for 5 months. I am freaking out, no information has been provided about how serious (or not) this could be, no information about warning signs I need to keep an eye out for.

Having a heart murmur sounds really scary, how can waiting 5 months be reasonable. I'm so so worried. should I give up on the NHS and save up for a private appointment instead?

Is your child sick or is this just a precautionary measure? Im guessing the 5 month wait means the latter. "Heart murmur" sounds scary but actually they're pretty common. Most need no treatment and many grow out of them.

Sorry to hear this, you must be concerned. I agree with PP. Also unfortunately this is the reality of our overstretched NHS.

He’s not sick. The sort of things that make me worry are that he’s quite small for his age, and I’m not sure he’s growing much at the moment eg he has had the same size feet for nearly a year. And he never really runs that much, and stops very quickly when he does, doing what I think is fake breathlessness. I guess I’m looking for reassurance that if it was serious it’d be obvious? He’s not going to suddenly drop down dead or just not wake up right?

I have a heart murmur. If it was a sinister issue your child would look ill and be struggling to breathe/ often sickly etc. They see the worrying cases first

In your shoes I think I’d go private for peace of mind. That’s worth the cost in my opinion

I would ask your GP these questions. I had a friend in a similar situation with her son - although he was only a few months old and had physical symptoms (excessive sweating and trouble breastfeeding). She had a long wait for an NHS specialist and paid out privately for an initial consultation. I can't remember what the issue was in the end but he just needed monitoring and the problem is now completely resolved. I think having got the private diagnosis she was able to proceed via the NHS.

I have heart murmur myself so know
Quite a bit about them. If the murmur is only being picked up on at 2 years old it must not be a loud one (the doctors can hear it when they listen to your heart). Mine was picked up on a few days after I was born and was a very loud one. With the 5 month wait I would say it’s not a serious one and children that young will sometimes grow up and they will go away in their own.

At a routine GP visit they found a heart murmer in my 1 and 1/2year old.
We only had a 3 month wait, they did assessment and etc and he eventually grew out if it.
It does seem a very long time to wait but most children do grow out of it.
You could always phone up and explain you are concerned and asked to be put on the cancellation list so if one comes up sooner they can phone you.
Good luck

To put your mind at rest, perhaps speak to your GP and ask their opinion of the waiting time, find out more about the heart murmur. Many are benign and harmless. GP should have copied you in on the referral too.
I can understand you are worried and hope this is helpful.

I think the timing of it being picked up and how loud it is are irrelevant unless you are a genuine expert e.g. A paediatric cardiologist....

Murmurs are extremely common, and often completely benign. Your cardiologist will have read the referral and prioritised the appointment accordingly. Trust me, even with stretched resources, if I see a referral that looks even slightly urgent I'll overbook a clinic and see the patient when it's safe.

My daughter had a murmur that was picked up when she was less than a day old. We had a scan of her heart when she was about 2 weeks old and found she had a narrow valve and needed an operation, got the results on the Monday and was in hospital for the op the next day. So if it was serious it would have been picked up before 2 and they would act quicker if it was in my opinion.

Hey you! My son is 8 months and his heart murmur was picked up at his 8 week check. Like you I was terrified, he's had it checked out. It was a 2/5 so quite quiet. There was a month or 2 wait to be checked out. They found he had a tiny hole in the heart, a harmless extra joining bit in his heart and a narrowing of his valve (mitral valve stenosis. When we queried, the Dr said typical signs of worsening is uncomfortable breathlessness when feeding or doing effortless movement. Bluish tinge to lips or skin, and being lethargic. He said that my son wouldn't just go to sleep and not wake up, it's a very gradual thing. We go to the royal Brompton once a month to have it monitored. So far his hole has closed up, and the pressure is getting better on his stenosis. They doubt he'll ever need treatment or if he did he'd be 30 or 40 years old. He is a happy and normal baby, you wouldn't think there was anything wrong with him! Most of the time heart murmurs are harmless , my grandad has one and he's 80 and it's never caused issues. They like to pick it up early to keep an eye on it so it doesn't get diagnosed too late like adult hood . There are loads of people out there walking around with heart murmurs who haven't even had it diagnosed yet, everything will be okay x

Speak to your gp, if he is concerned then will write another letter/call the secretary and get you bumped up the list. This does work. If he’s not concerned either sit tight, or pay for a private consultation

My dh was born with 3 holes in his heart and 3 faulty valves, he wasn't operated on until he was 4 years old.

A heart murmur is probably less urgent than that. (But I am not a medical expert.)

As has already been mentioned, a lot of heart murmurs are nothing to worry about and can heal on their own. Your ds's appointment should have been prioritised by someone who knows what they are doing.

If you need more information you can ask your GP or try to have a telephone conversation with someone at the hospital you will be attending, most consultants will take the time to ring you back and try to put your mind at rest/answer your questions etc. In the meantime try not to worry (easier said than done) and if you notice your ds getting worse/showing new symptoms you can always take him back to the GP in case it is related to the murmur.

Hope things go well and ds's murmur rectifies on its own.

The loudness of a murmur has no correlation to any severity of disease.
Did you tell your GP about the breathlessness and poor growth? Is there actually a drop on the centiles for height and weight? Shoe size is not reliable.
Your options are to go back to the GP and see if they can expedite the referral; phone the consultants secretary and ask for any cancellation appointments if you’re prepared to take a last minute appointment; or pay for a private appointment.
The vast majority of murmurs are nothing to worry about (murmur just means a flow sound from the heart, it’s not a diagnosis in itself). Please go and talk to your doctor again if you’re worried.

I’ve been through this; the murmur wasn’t there by the time we went to the appointment. To be honest if never detected before, I’d wait. Good luck.

Thank you so much for such a lovely and reassuring message!! Loads of luck for your little one, hope he keeps getting stronger and stronger

Should have said that was for elpeelo - this is my first time on mumsnet and not really sure how it works!

Honestly if it's only been found now as opposed to the after birth checjs and they aren't unwell then the chance of it being anything to worry about are minimal. Being small wouldn't be a concern but rather not following their growth line.

Thank you every one for your advice and reassurance!! I’m going to take a few deep breathes, a couple of g&t’s and check in with my GP, then just keep an eye for any symptoms but otherwise try not to worry...

My DS has the same age when we were told he had a heart murmur. We went private and it actually didn’t cost that much (although we had insurance). I’d look into it just for the peace of mind.