Worried Mum cant shift my anxiety over DD 8 Heart Murmur

[robo0404]

So i am new on here and hoping someone can help me reduce my anxiety over my Daughters Health. So ever since she was born she has had the occassional blue lips (2-3 times a year). I decided to get it looked at, the GP found a heart murmur and she has been referred to get an ECHO. However the waiting list is 26WEEKS!!

I suffer badly with health anxiety and keep fearing the worst.

She is absolutely fine in herself, eating growing very well but just can not stop thinking the worst. Any advice on how to reduce my anxiety?Starting to worry DD is picking up on it and trying so hard for her not to she my worries.

Thanks

Forgot to mention she had an ECG which came back normal.

I’ve just googled this for you as I know how scary the Internet is for something like that.

Virtually nothing I’ve read is remotely worrying in relation to this symptom. I’m very similar to you in worrying about my kids. I’d be beside myself.

But honestly, Google always has the scariest stuff and I just read 3 separate pages and it more or less all says it’s not something to worry about.

Furthermore, the NHS don’t make children wait 26 weeks for something that might be a genuine concern.

Keep busy and try not to think about it. If you’re really struggling, see you GP for your own sake. X

MissTerryLady - Thank you, i am bad at googling and always seem to find the worst case links.
I am considering seeing the GP for myself and how to deal with my anxiety as i am finding its effecting my normal daily life.
I keep trying to tell myself to go by how my DD is and she is her normal active self.

Appreciate your response.

@robo0404 I have a heart murmur, diagnosed as a young child. I'm now 20 and have had no issues so far, I hope this helps you :)

Heart murmurs are very common, they just aren't know about because most are symptomless so aren't looked for. A wait of 26 weeks indicates your GP isn't concerned. If they were then your daughter would be seen much earlier.

I had a heart murmur as a baby. It disappeared by the time I was 2 and a half. Not had any problems since. I'm 54!

Just make sure she doesn't overexert herself too much. Most people with heart murmers live normal lives as far as I know. The people who die from them seem to be marathon runners and athletes who intentionally push through 'the wall'.

@ReganSomerset - Luckily my daughter is more the academic type to the athletic type, besdies the odd cartwheel here and there.

Thanks all for your responses, my anxiety seems to be calming down and you are right if they thought there was an immediate threat she would not be on a 26 week waiting list. Just need to keep telling myself that.

Well, I'm 72 and my mother told me that I had a heart murmur as a child (and my lips sometimes turned blue when in the sea on holiday). I'm still here, and had echoes and ecgs some years ago, which were perfectly normal.

Heart murmurs are quite common in kids but it's natural to worry. It's just what parents do!

My DS (then 13yo) was discovered to have one last year when he was referred to the hospital with chest pains. It took over 5 months from the doctor's referral to his first consultant appointment when they did the ECHO (his heart structure was found to be normal). He then had 3 ECGs - normal, exercise & 3 day one which all came back ok.

He was supposed to have a follow up appointment six months later but because the hospital have been a 'bit behind', it's taken almost 10 months. We go at the end of the month.

DS is a runner and at no time has he been told to cut down on sport/exercise. He does an hour of sport most weekdays and yesterday it was nearly 3 hours. Luckily he seems to have outgrown the chest pains!

I was diagnosed with one at 18 when I was in hospital with my appendix.

40 now and have never had a single symptom or issue.

Hope that helps x

My mum has one! She's going to be 83 in a few weeks. She only found out because of general health tests about 15 years ago. It's been no bother to her! She was told at time of diagnosis it would have been from birth btw.

I have a murmur too. First picked up as a child. ECG's always come back with abnormal readings but Echocardiogram shows heart working fine. Just a minor issue. Has never caused me a problem.

As a PP said, with a child if they were worried they would be seeing you earlier. Try not to worry but easier said than done I know

I had a heart murmur picked up at the age of 10, mine is due to a valve defect ( MVP) but 40+ years later and loads of ECHOs it hasn’t given me any issues.
One the other hand my daughter was recently diagnosed with a serious heart defect and she has no murmur!
Try not to worry.

Thanks you all for your posts. Happy to say that my anxiety is so much better today and can focus on normal things.
Its reassuring to read your posts and know that it is most likely nothing Major. Just now to sit and wait till the NHS give us an appointment.

Robo0404 my 8 year old daughter has one. Had an ECG and an ultrasound and consultant said all fine, common and if ever mentioned by any Dr in future we can just ignore it as all okay.

Hi @robo0404

Our DS has a congenital heart defect. He had to have a valve 'popped' open when he was born and again a couple of years ago because it's malformed - it's called a bicuspid valve. It's caused something called aortic stenosis which is when the aorta narrows so the heart is pumping under enormous pressure. His consultant says imagine trying to water the garden from your garden tap but with something the diameter of a straw - gives you some idea.

He was on 3 monthly check ups after he last procedure but is now back to yearly check ups (so 52 weeks between appointments, sometimes it a little more because of timings for consultants)

My advice to you is what we are given by our consultants.

1. If there are any changes or you're concerned, called the GP and the appointments line.

2. Make sure the school is aware that she does have a murmur and is waiting for an appointment. They can keep an eye on her. They may ask you to get something from the GP by way of symptoms to watch out for. DS has a blanket arrangement with the school of being able to step out of any activity if he feels breathless or needs a break (hasn't happen in 12 years but his teachers know he must be given a break if needed). But that's for his particular heart condition. It may be worth giving the GP a call to check if there are any needs like that for your daughter.

3. Make sure your daughter knows that if she feels faint, breathless or has chest pains (highly unlikely with a murmur but it's something that tells you something is wrong), she must make sure a grown up knows.

And other than that let her enjoy her life. Our DS went away for a week with the school in his year 6. They did outward bounds activity including a 9km gorge walk and rock climbing. He took part in everything - his friends helped him up rocks when he needed a boost and the teacher took the pace of the walk down a tad but other than that you'd not know you had a heart child amongst them.

Don't worry about the appointment time, just make sure you keep an eye out for changes and call if you're concerned. A lot of murmurs rectify themselves - it's often caused by the way the heart grows in the womb, sometimes there are 'gaps' or holes where areas don't quite fit together. It's often a case of monitoring annually rather than having to have treatment.

Had a murmur as a child which was never investigated. Had various heart tests done as an adult for unrelated matters and while the murmur was noticed, all tests were fine and it was finally pronounced as harmless!

I have a heart murmer which I’ve had for ever, I’m now 51, had 3 children, I’m fit and very active and don’t suffer any ill effects from it.
I’ve recently been in hospital with an abnormal ecg but my echo showed a healthy heart. My murmur for some reason causes a lot of excitement amongst HCP’s for some reason!

My youngest DD was diagnosed with one at 16, after a bad chest infection. She was referred to cardiology and had lots of tests, which diagnosed mitral valve prolapse (MVP). It took around 7/8 months from our initial GP appointment to diagnosis. She's had no problems from it at all, but funnily enough she often had blue lips as a child but it was never picked up at the time.

I was in a complete state of panic for around a year, but you do get used to it. I've made her tell her Boss at work and we're all aware of it in the family so if she ever was unwell, we'd know. It does seem really frightening, but it's also very common and at least know you are aware of it so if any unlikely problems do happen, you can get the right help quickly

My DD8 has a heart murmer and funnily enough so does her consultant at the childrens hospital.
At first I was filled with panic but her consultant was very reassuring. She said that if a child has a murmer that is going to cause health problems then they already know it before any scans etc.
My DD is monitored annually and nothing "exciting" is happening about it.
We are advised that she needs to be kept active, a healthy weight and she is not to get piercings and tattoos until medically allowed. Also dentists need to be made aware - something to do with antibiotics needing to be administered after treatments.