8-month old baby has a tiny hole in her heart -- told not to worry?

[esgill]

Had an awful week of news health wise for our baby. After a couple of seizures she was diagnosed with focal epilepsy though told it could well disappear with time. She had an ECG and EEG -- EEG picked up on epileptic activity. ECG was almost fine and paediatrician said probably normal but to have it checked with cardiology to be sure. Today we had another EEG and heart ultrasound. We were told everything was good and discharged.

I got a call this evening from the cardiologist who reviewed everything and first said, 'everything was fine.' Then, told be not to worry but our daughter has a tiny hole in her heart. When asked, she said it won't need intervention or cause any issues and will probably close on its own (she was sure it will given it's in the muscly part of the heart) but that we'll have a review in a year to see how she's doing. I asked, if it hasn't closed by then, will she need surgery, and she said no. II told her even if she told me not to worry, it sounded very anxiety inducing, to which she assured me we needn't worry and can continue as is/don't have to worry about exercise. I asked if there could be a link between her seizures and this and she said no. She said the only way it could affect her is there's a slight increased risk of heart infection if you don't look after your teeth well.

I know a health professional has told me not to worry but I've just had the most awful week health anxiety wise. Can any of you share stories?

I should say that she is otherwise thriving, meeting all her milestones and gaining weight as she should...

Tbh even if it is absolutely fine they should have understood that they know all that stuff but all you hear is your baby has a hole in their heart! You'd expect them to take a bit of time with you and explain things better.

Until you felt reassured I mean, which clearly you don't.

Two of my DD’s have vsd’s (hole in the heart). They haven’t closed, but they’re 12 and 10 and it doesn’t affect them in any way at all. They have annual heart scans.

My grandson is 3 months old, he was born with a very rare heart condition which we were unaware of and he had open heart surgery at 2 days old. He had a check up last week and the consultant said he was now fine, I will never not worry about him but I have to believe the professional.

My friend's daughter has a hole in her heart and is now 33 , she's never had any problems.
Its so difficult I know , especially when they are so tiny.

ALL babies have a hole in their heart. because in the womb, blood takes a shortcut, bypasses the lungs and goes to the placenta. After birth the holes heal, and blood is directed to the lungs. This is normal. The length of time it takes for the hole to heal varies. And occasionally need intervention, But in itself, is not an issue

@WaitingForMojo thank you for sharing. Good to hear they're doing well? Do you know where in the heart they were or the size? Were you told much the same as me, not to worry but? Why do these things need monitoring long-term if they aren't a concern? I didn't find out the size on the phone call (tbh I wouldn't have known to ask) but I've been googling and stressing myself out. She just said really tiny and no one would have picked it up and we not been thoroughly investigating everything for these current symptoms. I don't even know how to get back in touch.

DS had a hole in his heart when he was born, by the time we went back at 1 it had closed by itself. I know it's easier said then done, but try not to worry, it really didn't effect him at all.

@CremeFresh I know it's so hard. Her heart might be fine but I'm not sure mine is... 😣Have had bad chest pain ever since she called from worry.

My brother was born with a hole in his heart, he was scanned at 6 months, and 12 months and by 12 months it had closed. It really is very common but I know I would feel the same as you. With time it will become less of a worry as you come to terms with it. It'll mostly be shock I would say and obviously you've had a very scary week with your baby having seizures. Be kind to yourself! X

I have quite a big hole in my heart (PFO). It was diagnosed when I was in my mid forties during a work up for an unrelated health issue. Mine is 3mm which is just below the threshold for intervention but the intervention if you do need it is minor - they insert a small balloon and inflate it to close the hole.

Sounds like your baby’s is much smaller. Even having a largish untreated one I have no symptoms and don’t need to make any lifestyle changes either exercise, dietary or stress related. I’m in my mid fifties now and run 3km a day before work and hold down a stressful job. I really wouldn’t worry - they are really really common and most people don’t even know they have one.

My mum has this and also has to be careful at the dentist. She is 75 and fighting fit. I do agree with the pp who says that the consultant should understand that you need more info and reassurance though.

Both my DD’s originally had two holes. One was a 2mm asd (between the atria, the upper chambers) and the second was a 4mm vsd (between the ventricles). This was the older dd. She was expected to need surgery as she was sleepy and struggling to feed, but she picked up and didn’t need it. The asd closed. The vsd is 2-3mm now.

The younger dd, holes in exactly the same place but smaller. 2mm vsd, and the asd just a pinprick

It’s been called ‘perimembranous, muscular vsd’ if that helps.

My baby was born with a large VSD and needed surgery by 5 months old. The symptoms were immediately obvious to us as it took her a month to regain her birth weight. She was very sleepy and would be too exhausted to finish a feed (amongst other problems).

When she had her first heart scan I was told straight away that she would definitely need surgery. So I would definitely feel reassured by what you've been told, and the fact your baby doesn't have these symptoms means their body isn't struggling.

As a PP mentioned, all babies are born with a small hole in their heart and the vast majority close on their own.

Try not to let this cloud these special early days with baby (I know that's easier said than done!)

DS had a hole in his heart diagnosed when he was about 12 months, it had disappeared by the time he was 18 months.
(he was an active and healthy baby, growing well, and hit all his milestones on target. We were told it would close up but I still worried a bit, because, well, you just do.)
He's certainly ok now, 20 plus years on.

Thank you for all the reassurances and for sharing your stories. This is comforting — good to be reassured it’s probably not as bad as it sounds.

really hoping it closes anyway. The cardiologist said it won’t need intervention and won’t affect her but I wonder why we have to have her seen in a year.

Plus yes, I do need more reassurance. I tried to get back in touch but I was lost in a maze of hospital switchboards…

My son was born with a hole in his heart, which was found at his 6 week check up. We have been under cardiologist care since then and he had open heart surgery in February to close it.
now I’m sure what your cardiologist said is true but you have a right to ask for more frequent check ups if you want it kept an eye on more regularly. I did this when they tried to move us to appointments every 2 years which I found too infrequent.

But I wanted to add - I felt the same when k was first told. For the doctors sometimes they forget it’s not somethjng routine for us, and they can be a bit blase. If you can speak to a cardiac nurse specialist they are much more sensitive and ready to answer questions

My sons was a perimembrous vsd but only needed closing because it was affecting a valve. Sorry I didn’t mean to write this across 3 msgs!

I accompanied an elderly relative to an appointment recently where he was examined by students. The consultant was putting them through their paces as relative was a complex case and also is ex clinician so v happy to be of help to students.

All the students identified the murmer that indicated the hole in his heart and were asked "and why aren't we worried about this"?

The answer was "because Dr S has had it for over 80 years and it's never caused him the least problem."

I hope you dc's saying the same in 80 years time.

I hope so!

I should note my baby doesn’t have a heart murmur. The stethoscope readings are fine. It was with the EEG that there was a slight deviance which the paediatrician was happy with and said normal deviation for age but then she was referred for a cardio ultrasound as they said they don’t like taking any chances with babies

I used to work with a doctor who only found out he had a hole in his heart as a student when everyone was practising listening to each others hearts.

It didn't need any treatment and he was perfectly well.