Been told baby has 1.5cm hole in heart

[Moonshine160]

Posting here because I posted on the Parenting board and had no response so wondered if anyone could offer any advice.

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?

It’s a shock when you’re told this about your tiny baby isn’t it and heart issues sound so serious.

Two of my dc have vsd (hole in the heart) - also both had asd (atrial septal defect) which closed.

Dd’s are 11 and 8, hole still there but hasn’t needed surgery as not affecting their heart function. The older one did as a baby, affecting feeding and weight gain, but she picked up and so didn’t need surgery. As their heart grows, it has less of an impact.

Smaller holes than your ds. Older child 6mm younger child 3mm. But both doing great and have an annual ultrasound.

I do know dc who have had the surgery and whilst all surgery does carry risks, it’s a very straightforward surgery and as heart surgery goes it’s minor. It’s usually not open heart surgery. It’s a huge deal to us obviously but the surgeons do much more complicated things every day.

I don’t mean to sound dismissive, just that kind of thinking reassured me, that it is very very minor compared to more complicated defects.

Oh how awful for you. It’s a shame the doctor couldn’t give you more reassurance, it sounds like they were a bit dismissive. Can you make another appointment to chat it through? Sometimes being able to ask questions and so on helps. And of course you want to know everything you can.

I used to look after a little girl who had heart surgery when she was only 2 years old. She had a big scar down her chest and when I was putting her down for a nap you had to unbutton her top so she could stroke it 😂 it helped her relax and fall asleep, she would have one arm behind her head and the other stroking her chest like an old man! It was very cute. She had no serious health problems after the surgery as far as I’m aware, although she was tiny. Not sure if that was just natural though, her mum was not large.

Did he tell you what kind of hole it was? The name of it? Like the others have said although it is really scary it is surgery that is easily recovered from and the children go on to lead very normal lives.

Thanks everyone. It’s an Atrial Septal Defect. He said it’s quite common but was certain DS will need surgery due to the size of it. I feel like I’m in shock still

My LO had 2xVSD (ventricular septal defect) which closed by itself and an ASD (atrial septal defect) which didn't. She also had pulmonary stenosis (narrow valve).

The ASD wasn't diagnosed until around 9 months old, she had scans every few months up until then. Her hole was 1.6cm and they gave it a while to see if it would close on its own, they hoped it could be fixed via catheter. When she was 2 we were told that it wouldn't close by itselfand that she would need open heart surgery as there weren't the margins that they needed to apply a patch via catheter.

When we were told about risks, they were less than 1%; this is surgery they do day in and day out. We were always told any surgery would be left until 2 or 3 as that's a good age when they're big enough for the surgery to be a bit easier but young enough that they don't remember well. The heart can manage doing a bit of extra work at this age but they would struggle if left untreated into their 30s.

My LO had surgery at 2 years 9 months. She was on hospital for 5 days but was running around after 2 days. Although there is a scar, it is really thin and faint. We made a fuss of how much we lover scar and kissed it every time we saw it - telling her it was what made her better. Now she says not to kiss it because it's so small you can't see it (it isn't but it's nice that she feels that way).

While we were there we saw lots of children come in for catheter procedures. They'd be there early in the morning, go and have the procedure and be sitting up eating by lunch time and discharged before the end of the day. It's amazing how quickly little ones bounce back.

I know it's really hard to not worry but try to take comfort that if they were very concerned, they would be operating as an emergency.

Not sure if this will reassure you, but my best friend at primary school had a hole in her heart repaired. I'm 55 now so surgeons have been doing this for a long time.

My elder child had an AVSD which was discovered shortly after birth. Surgery was going to be delayed until they were bigger, but the heart started failing so it was done at three weeks old. He's 30 now 😁

I know it's a shock, and it's natural to be worried, but I hope the stories on here help you feel more reassured

I have a VSD, diagnosed at birth, I wasn’t well enough for surgery. I’m in my late 40s now, it’s still there, I’m still here.

I never antibiotic cover for dental work and for giving birth. I had a time limit for pushing while giving birth (I made it with a minute or two to go!). Other than that, it has had little impact on me. I didn’t pass any defect on to DS, had regular ECGs and x-rays as a child. Only thing that has come up recently is that I had my 4th covid jab.

@Helzzzz thanks for taking the time to post this, it’s really reassuring. Your LO sounds like a little trooper

Not a problem. I remember how scary it all felt.

If you get to the point of needing surgery there's a great book from British Heart Foundation called Sammy has a heart operation which we read lots with LO. There's also some episodes of Get well soon hospital on iPlayer which show the different tests that LO may need (x-ray, echocardiogram, ECG, cannula, operation, NG tube) and we watched these a lot. We then told her the night before that this was going to happen to her and she was really good about it all.

We also got a Molly's Dolly - https://chfed.org.uk/shop/

Also useful at the time are wrap / button up PJ's - we got some from here https://pyjamafairies.org/order-garments

Also what we found helpful was taking lots of pictures of the various stages with her and sometimes she likes to see them and talk about what happened. At the time we thought it would be helpful to prepare her if she needed further surgery down the line but thankfully she doesn't appear to need anything more just 2 yearly check ups. They also came in handy for friends when their baby also needed heart surgery.

My sister had this not diagnosed until she was four and had surgery at age 10. This was back in the 1960's in the very early days of open heart surgery and my parents were quoted odds of 50/50! She was absolutely fine and is now a grandmother about to turn 70 this year. These days it is pretty routine stuff not always even needing open surgery, but done through a blood vessel. Although I know it is bound to be worrying when this is your child and no-one can give a cast iron guarantee of course but the odds these days are really very good.

Sorry to ressurrect this post but my son has a small VSD which is causing prolapse in his aortic valve and is scheduled to have open heart surgery to close the hole and fix the prolapse - he is 6. If anyone has any tips on how to deal with this, it does sound scary.

@trying29 sorry that you’re going through this. When was he diagnosed and does he have any symptoms, out of curiosity?

My little one is now 15 months and since discovering the large hole (his is an ASD) they have also discovered a secondary smaller hole and he also needs valve repair as blood is regurgitating backwards. Every appointment we have his diagnosis seems to get worse!

He definitely needs open heart surgery to repair it all in one go. For us it’s a waiting game and we have about 6 months between appointments which is torture. If he is still managing ok then they’re not going to schedule surgery until he’s around 3.

I don’t have any advice but I know how scary it feels. The statistics are so so good and it’s just another day in the office for a heart surgeon. Where will he be having his surgery? Weve been referred to Leicester.

He was diagnosed at 3 months old. His hole has remained the same size this whole time - so it looked huge as a 3 month old but now seems quite small. They always tell us he is asymptomatic but he is very small for his age and was under a dietician between 2-3 because he was so small. So he hasn’t yet got to regurgitation but they’re operating now to avoid reaching that. We are under the Evelina in London. The doctors have been worried about valve damage happening for a few years so I guess we knew it would be coming bur it feels a shock. I find it harder going for check ups with him now he’s older than when he was 2 - he was more accepting then! We’re just waiting for a date right now.
how are you feeling about everything - sorry I realise I’ve just listed our issues out. I was fine until the consultant mentioned in our last chat that they’d have to use a heart and lung machine to act as his heart whilst he’s being operated on.‘I know it’s routine for them but it sounds absolutely terrifying!

My sister (70 last year) was born with a hole in the heart. Had open heart surgery at age 10. It was considerably riskier in those days, some people now don't even need open heart surgery and can have the hole closed percutaneously (via a catheter through a blood vessel into the heart). When you see the paediatric cardiac specialist they will no doubt be able to reassure you. Sister is perfectly fit and well by the way and has led a completely normal life.

I’ve already been told it will be open heart surgery because of the damage to his aortic valve. It cannot be done by catheter hence my asking re the surgery.
I understand it’s routine surgery but when it’s about your child and you’re told they will have to stop their heart for the operation, it’s pretty scary and upsetting

@trying29 we have been told our DS is asymptomatic too but he’s also tiny despite having a huge appetite! He’s just below the second centile for weight and height and we’ve been told that’s probably just his build but our eldest DS (4 YO) has always been on the 91st centile for height! He also gets very breathless if bum shuffling or walking.
Im feeling quite apprehensive and like there’s a weight on my shoulders. We’ve been told there’s more chance of it being successful if they operate around age 3 but I’m worried about it causing lasting damage the longer it’s left.
His cardiologist also told us about the machine to stop his heart while they operate and I burst into tears and said “but what if there’s a power cut?” I felt like a right idiot afterwards!
I have heard amazing things about Evelina. You’ll be in the best hands. How long away until they operate?

Oh I know exactly how you felt!! That thought about the machine has run through my head too. And with regards to the difference between my two sons, irs exactly the same for us. When my VSD son was 2 I took my eldest with me to the apt to prove how different they were in build. At that point, he was put on high calorie milk to bulk him up a bit (but he’s still only between 2nd and 9th centile).
we’re just waiting for the date, should be in next few months, but lots to do beforehand. We need to speak with the surgeon, clinical nurse specialists, and play therapists.
I think your doctors wouldn’t allow the surgery to wait til your son is older if they didn’t think it was safe, but i definitely understand how you feel