Heart murmur and poor weight gain.

[QueenofmyPrinces]

I have a son who is 5.5 months old.

12 hours after his birth he was found to have a heart murmur and so was sent for an ECHO which the Cardiologist said appeared normal.

I was told some babies are born with a valve still open but it’s not a problem and would close within the next few weeks. They made me an appointment to go back in a month to have his heart listened to again and the murmur was still there.

The paediatrician was disappointed but said it should be gone within another month so made us an another appointment. The appointment was cancelled and rebooked by the hospital so my son was actually 4 months old when he was seen. His heart murmur was still there and he has now been referred to Cardiology. However, his first appointment with them isn’t for another 5 months!

Alongside this he has always been slow to gain weight. He was born on the 91st percentile and is now on the 25th, maybe even a little bit under.

He has Cows Milk Protein allergy and has required two tongue tie repair procedures and those two issues have been put down as possible reasons for his poor weight gain.

Over the last few weeks his gain has really slowed (30g in a week when he was checked last week) but today’s weight shows he actually lost weight: 100g loss in 3 days.

I’m feeling so disheartened and although I’m trying not to panic I’m really worried there is an issue with his heart and that’s why he’s not putting weight on.

I’m breast feeding him so I have a dairy free diet. The GP has prescribed me special formula but my son absolutely refuses it. I have tried offering him some of my expressed breast milk but he screams the minute I go near him with a bottle.

Has anyone been in a similar situation and the heart murmur has been completely innocent?

I’m so, so worried about my baby and feel on the brink of tears most days

[winterwonderly]

I have no advice on your specific situation, but I recently was told I'd have to wait about 3 months for an initial hospital appointment for my dd who is only a couple of months old, and that was on the urgent list! I decided to make a private appointment, paid a couple of hundred pounds and was seen the next week. It was so worth every penny, I just couldn't have spent months not knowing if there was a problem or not. Our issues have turned out to not be serious, but do need treated which will be done on the NHS.

I completely understand how worried you must be and it's ridiculous to have to wait so long to get any answers. Would a private appointment be an option for you? What advice have they given you in the meantime about the weight gain?

[Rainbowsandflowers78]

Try and get an earlier referral. Go to your gp and explain your current concerns re weight loss etc. ask for a referral under the two week guidelines.

[eddiegetlost]

Hi Queen

I have been through just this although the heart murmur was picked up later in our case. Baby severely failed to thrive, also losing weight over several months, born on 95th centile for weight and was on 2nd at 12 months. At that point a family friend GP looked at DD's red book with the charts in and said he would have referred her to a Cardiologist months ago and I should go back to my GP and push. He also said he suspected the extra valve had not closed...

He was quite right - we had an Echo and it could clearly be seen, and a murmur heard too. There is a fairly simple (in the scheme of heart surgeries!) fix to close it but in our case it spontaneously resolved itself - at another scan a few months later when we were arranging the surgery you could see the blood was no longer passing through the valve so it had finally closed - amazing! She was about 18 months by then. By the time she was 2.5 years she had regained most of the weight and is an average size now - 50th centile for weight and height or thereabouts. Absolutely fine and no harm done. But the whole experience was really terrifying!

I also learnt that heart murmurs are very common (I have one too!) and that failure to thrive has many other causes - CMPA / reflux among the leading ones (this was my paed's defence for missing it!)

If a private Echo was a possibility that might be the quickest way to some peace of mind. The proper name if you want to look it up for the 'valve that hasn't closed' condition is a PDA (Patent Ductus Arteriosis )

My advice is - if he has any of the other symptoms of a PDA push hard for an earlier referral. Mean time try all the other strategies your GP suggests regarding weight gain as although the Murmur and the growth could be connected they might not be - just two separate reasonably common issues. If you see any of the other 'big' heart condition indicators while waiting for your referral (slightly blue lips or breathing deeply in a struggling for breath type way) go to A&E (as you would anyway!)

Don't panic yet - hugs for you, it's hard to be calm when it's your own baby

[QueenofmyPrinces]

Thank you everyone for your replies.

I rang the Cardiology receptionist last Friday and I explained to her that my baby had now lost weight as opposed to just gaining slowly and so could my appointment be bought forward as I didn’t feel comfortable waiting another 5 months. She told the Consultant I would be seeing was actually running a clinic that day so she’d speak to her about my concerns and then call me back. Surprise, surprise though, I haven’t heard anything.

I was told his condition was called PFO when I saw the Consultant at 4 weeks of age, though at the top of my head I can’t recall what it stands for. They basically said it was an innocent murmur that would soon be gone, but obviously it hasn’t.

I think I’m going to get my son weighed again on Friday to see if he’s lost any more weight over the course of the week and then call my GP to see if they can put pressure on the hospital for me to be seen quicker.

[foxyfemke]

Not gaining weight and heart murmurs need to be seriously looked at. Keep pushing for another appointment and another echo.

Is he sweaty/clammy at all? How's his breathing? How's his colour? I'm not a doctor, but my son had a congenital heartdefect, so I know a bit about this.

[QueenofmyPrinces]

He’s seen a paediatrician about it three times at the hospital who has never been concerned, she’s only referring him to Cardiology now because it hasn’t resolved itself. She said she still isn’t concerned though.

Otherwise he’s absolutely fine, no swearing, his colour is fine and he’s a happy little boy. Nothing worries me except his poor weight gain and I just need someone to tell me that his heart murmur really is nothing to worry about and a 5 month wait seems like such a long time.

[foxyfemke]

A lot of people have heart murmurs and are absolutely fine. If there's an issue, like not gaining weight, it could be linked. I think the paed is being a bit too relaxed about this.

[macaronip1e]

My dd had an ‘innocent’ murmur - picked up and 6 weeks then monitored by cardiologist over 3 years by which time it had resolved itself.

The cardiologist really reassured us not to worry in her case as, if a murmur were serious, we’d see other symptoms - tiredness when feeding, laboured breathing, blue tint round mouth. It happens that she was a slow grower after starting off 75th percentile, but that didn’t seem to worry the cardiologist.

I realise the lack weight gain will be a worry, and seeing the cardiologist to have your son properly checked will be important to reassure you, but our experience of murmur and slow growth was fine.