Been told baby has a 1.5cm hole in heart

[Moonshine160]

DS is 7 months old and has always been snuffly, congested and had repeated chesty coughs. Also really small for his age on the 0.4th centile. The doctors always sent me away saying it was viral and he was just catching colds from DS1 (4 years old), then they told me it’s bronchiolitis which is again viral. He was really struggling with his breathing so 3 weeks ago I went to a&e with him, he was given antibiotics but they found a heart murmur so referred him to cardiology. We’ve had our appointment today and he has a 1.5cm hole in his heart :( it is going to require surgery as it’s too big to close on its own. I asked questions but nothing got answered, the doctor said he was just a paediatrician and we need to wait for our referral to the heart specialist which will be at least 4 months due to covid backlogs. He did say that the surgery might not be until he’s between 2 and 3 years old. He couldn’t reassure me that he will be ok, just said that “all heart surgery carries risk” which i understand but I am beside myself with worry. I’ve been googling (which I know is the worst thing to do) and most children that had holes in time closed on their own. The doctor said that DS’s is too big to do that. Anyone any experience of this that can give me any reassurance please?

No experience.... However just wanted to say that I'm really glad you got a different answer and that things are in motion.

I would go back to the GP and start asking questions. They won't necessarily know either and of course you haven't had a great experience of them (although what they said could also have been true, ie I guess most kids catch things from their siblings, and the murmur might not always present ....? I presume some one has listened to his heart at some point since birth??). However they might know some, it keeps you visible and - as a recent experience of my own shows - it is a way to ask questions to a professional who is normally calm and knowledgeable (instead of to Google - agree, bad idea for scaring yourself witless for every bad case scenario).

(one question I would ask is why age 2/3? - backlog, or developmental (hopefully the latter)?).
(even the most routine of surgery carries a risk, and honestly, you'd never get a responsible doctor to say 'it will definitely be fine' - just on that very tiny case it wouldn't be).

Hi, I'm sorry for what you're going through and imagine it must be really hard for you 😔

I know this isn't the same, but one of my friends found out in her 20s that she had a hole in her heart (since birth) and it took one open heart surgery to fix it. She's completely fine now. I'm sure you're little one will be okay, thankfully it was caught early.

I'm a paediatrician (though obviously you should never believe what anyone on the internet says they are!)
I can't speak about the specifics but just a few things. They like to do surgery on these types of problems between 1-3 as that's the sweet spot where they're big enough to go through surgery well, but young enough that the hole won't be causing major problems.
The viral illnesses probably were exactly that, but if you've a VSD/ASD they can get more sick with a mild illness as the heart is already working a bit harder, and they can be more prone to getting chest infections.
With a larger hole, it's very common to not hear a murmur as a murmur is the sound of turbulent flow, so if you've a big defect the blood on both sides is mixing easily, rather than shooting through like water from a water pistol.
While no one wants their child to go through heart surgery, if it's a VSD or an ASD, it's one of the most straightforward things to fix, and most kids have no issues ever again after that.

chfed.org.uk/how-we-help/information-service/heart-conditions/ventricular-septal-defect-vsd/

This is the leaflet I give parents about VSD, as I think it's clear and honest. I would say if they're not planning urgent surgery it's unlikely that your child has any degree of heart failure, so don't get too focussed on that side of you can help it. I assume you've been taught the the things to look out for for that.

Chatting to your GP is probably a good idea, apart from anything else, most areas have good charities/connections to give parents support.

Hope that makes sense!

@Farrowandballbag thank you. This is really, really helpful. It’s an ASD that he has. Can I ask, could the constant cough and congestion that he has be caused by the ASD?

The chronic cough is very common, if it gets worse you should have him reviewed. The congestion is something I've seen a few times, but I don't actually know why that would be, or if it is just coincidence- I'm not a cardiologist though!