Unexpected outcome of paeds appointment, bit blindsided

[chilliheeler123]

Namechanged as have spoken to family about this already. Just wanted to post here for a handhold and maybe a tiny bit of a moan.

Saw a paediatrician today with 6mo DS; we were referred for CMPA and reflux. She was very thorough and did a full examination whilst we were there, but I was gobsmacked when she asked if he had already been seen by anybody for his heart murmur ☹️

DS has had at least five doctors listen to his heart since he was born, and nobody has ever mentioned it. I’m a little upset as I was so worried about him having a healthy heart due to a very strong family history of congenital heart defects (12 people on my Dad’s side have PDA, and I was monitored for a small ASD until it closed naturally when I was about 18 months old), so I have specifically asked every time if there was any evidence of any issues with his heart, and have been reassured every time that everything was fine.

I’m a little reassured that it must be a very faint murmur if it’s been missed multiple times, and of course there is the possibility that the paediatrician misheard today and he doesn’t actually have a murmur at all, but I just feel like he has been let down a bit, especially as I’ve asked about his heart every time he’s been examined.

She also noticed he only has one palmar crease on one hand, but she isn’t concerned about it as he doesn’t have any other symptoms that would point to any genetic issues, and he has two on the other hand so I’m trying not to worry about that too.

Thanks for reading. Handholds, personal experience and unMNetty hugs all welcome whilst we wait for his paediatric cardiology appointment 😕

I don’t have any advice but didn’t want to read and run

I can offer a gentle hug if it’s helpful? X

I've had two doctors ask me if I've ever seen a cardiologist, when I questioned further, they both said (years apart) they thought they could hear a heart murmur.

On the second occasion I was able to direct the doctor to the echo cardiogramne I'd had five years earlier that showed nothing amiss.

I'm 74. I hope that gives you some comfort.

The Palmer crease is most likely to be nothing. My son has one. My MIL went mental about it after he was born (think oh my baby my poor little grandchild what am I going to do?) then when he had genetic testing years later and they thought he actually had a syndrome there was nothing and the doctors said it wasn't important. (And MIL could not have given two shits by this point!)

But you can ask for a fragmented DNA test if you want to just to reassure.

My 2 year old has just had his heart murmur investigated. It was missed or not there until about 6 months ago. Heard 3 times since then. Had the scan and ECG. All results came back normal and he has been diagnosed with an innocent murmur. Like you I was worried but everything was absolutely fine. I even started a thread about it on here at the time and got lots of comforting similar stories. Hope all goes well for you and your LO.

This happened to my son when we went to the GP about something unrelated when he was 3. Got sent to the hospital outpatients but the doctor there was completely unconcerned and said it was a functional murmur, just a sound basically. I pretty much forgot about it for years until I asked about it when he was about 16 and was told he didn't have a murmur any longer.

My daughter was two when i was told she had a heart murmur by her paeds consultant in an appointment about her allergies, was told it would be checked at the next appointment (2 months later) and at that appointment was told it was nothing, her heart was fine.

Oh that must be terrifying for you! I'm sure they'll do thorough testing but hopefully it'll be nothing serious. You can also ask for full genetic testing as well, which should reassure you.

To reassure you, heart murmurs can come and go, or can change over time. Babies' hearts are growing and their anatomy/function also changes slightly over time, particularly in the first days-months of life.

Various things can also affect circulation in a given moment.

This can all influence whether a murmur is present or not, in both the structurally abnormal and the structurally normal heart.

Very soft murmurs are also not an objective finding - there are clear cut murmurs but also a grey area between what is classified as a very soft murmur Vs what are just normal heart sounds.

It's not true that because a murmur was heard on this occasion, that it has been "missed" previously. It is more likely that previously, no murmur was audible.

A murmur is a common finding in babies and children, most of whom have normal hearts and in whom a murmur may not be heard on another occasion. What is much more important is how the heart functions in terms of circulating fluid around the body. Babies whose hearts are not working as well usually have problems such as poor growth, and signs that they may be having to work harder such as breathlessness or sweating, particularly during feeds. They are also more susceptible to repeated chest problems such as bronchiolitis. A baby that doesn't have any of these symptoms may still have a structurally abnormal heart - but usually a minor problem which may be monitored for some time before any, if any treatment is actually needed. Babies with very serious heart defects are unlikely to get to 6 months of age without a related hospital attendance.

I really hope this helps. In a well baby, an incidental finding of a heart murmur is not on a list of things that would worry me.

Can be caused by a virus. Goes away once well again. Could it be that?

I have a heart murmur due to an electrical fault that was only detected when I was 38 - I'm 46 now and it's still asymptomatic. There are such things as innocent murmurs - mine isn't innocent, my ejection fraction is 46% (or was when last tested) but I am still going strong - it's totally normal to be thrown by this new information, but hopefully it will turn out to be a benign issue.

Offering hugs as it’s scary to hear the words heart murmur but be reassured that it’s being investigated now and hopefully you’ll get more information very soon.

I have a congenital heart murmur that wasn’t picked up until I was unwell ( not related) at 37 and it totally threw me that it had been missed my entire life. It was a shock initially but I’m monitored regularly and cardiologists have all been very helpful and supportive.

I went on to have another child a couple of years later who was checked immediately after birth and I was told it was good news, no murmur and the dr added in that she’d been totally expecting to hear one given my history which threw me somewhat as no one said it so bluntly while I was pregnant!

Fast forward to a routine GP visit age 3 and my GP told me she could definitely hear a murmur so I do understand your worry and shock. Referral to cardiology followed and an echocardiogram revealed it was just an innocent murmur that she’d outgrow which I’m assuming she has as she’s now a fit, healthy 17 year old.

Hoping you don’t have long to wait to get answers and the outcome is a positive one for you too.