Heart scan - Found small hole in heart :-(

[Lyndz]

Hi ladies,

Had a hospital apponitment today to check on Bella's heart murmur which was discovered a couple of months ago. Saw the Pediatrition today and he confirmed she has what he thinks is a small hole in her heart between the two lower ventricles. He thinks it's a small hole because it's making a loud noise, apparently the smaller the hole, the louder the murmur. He says its called Ventricular Septal Defect (VSD). He says it may just close on it's own and he doesn't think there is any need to be worried, he's ordered further tests and scans just to be sure, which i'll get an appointment for in around 8 weeks. He thinks it's going to be a case of check ups every 6 months and he says it shouldn't affect her life so not to do anything different.

Problem is, now i'm so worried. I've been told there is a hole in the organ that keeps my baby alive and all sorts of crazy thoughts are running through my head. I've been so watchful of her this afternoon it's crazy, panic runs through me every time she gets a little short of breath (which is crazy as she's been running around in the heat all afternoon so she's bound to be short of breath therefore having nothing to do with her heart!!!!!)

I'd be nice to hear from mummies that have been through this, how do you cope????!?!?!??!?! I feel like i'm going a little crazy!

 

[Mrs Dot]

Hun I have no experience of this but didn't want to read and run. I'm sure you're doing a fabulous job and your little angel will be fine. With close checks and monitoring at least you know that she's being looked after. Big hugs and prayers for you all hun xxx

 

[Miss_Bump]

xx

 

[happyface82]

Aw hunny I really have no advice. This must be so hard for you. I think the best way to look at it is that even though something is wrong which was obviously your worst worry at least its something that you can almost ignore if this makes sense. If it doesn't affect her in anyway then she is very very lucky.

Of course a mother's worry is something else. I can not even imagine how you feel but I'm sure in time you will feel better about it. Only bit of advice I can give is learn as much as you can about the condition so that you feel on top of it.

 

[netty]

Alex has a small hole in his heart too
we have to have regular scans.
I can hardly tell at all now except when he is poorly then he tends to look abit blue around is lips.

the cardiologists and paeds are great

 

[fluffpuffin]

Just wanted to send hugs. It must be scary to get a diagnosis like that. But just try and remember she is being monitored regularly & trust in the doctors. X

 

[WW1]

hun. I totally understand how you are feeling xx

Rebecca has 2 holes in her heart. One of them will be monitored in the same way as for your LO. The other one will require keyhole surgery sometime this summer.

I know how scary the diagnosis is but there are a few things to help keep you sane (I hope)

- holes in the heart are very common indeed. I was told that about 1 in 4 people have them - many of which remain undiagnosed as they don't affect the working of the heart at all.

- It's better to have the hole diagnosed early so it can be properly monitored and corrected if needed (and that is an "if" rather than a "when" as they may well not need to do anything at all).

- If your LO does need treatment, the advances in cardiac surgery in recent years has been incredible. Many holes are now closed using keyhole surgery (which is actually just an overnight stay!) Even 10 years ago this wasn't the case and it is likely that should your LO require a procedure, the techniques will have become even more sophisticated by then.

It really is a scary time but I'm sure your LO will be just fine! Please PM me at any time if you want to

 

[eddjanuary10]

I can only imagine your worry, hopefully you will find comfort from others with similar experiences. Glad she is well and happy though x

 

[RedRose]

Ah bless you. Great advice from WW1.

My nephew has a hole in his heart, and we were all very worried when we found out as it sounds like such a huge and scary thing, but it really is suprisingly common.

Of course you are feeling scared, you are probably still in shock from hearing the news, but I think that in time you will feel better about it.

Thinking of you both

 

[honey08]

thinking of u

 

[Sushai]

Just wanted to send lots of

 

[sophxx]

Thinking of you lots. X the cardiologist are amazing now a days and there's lots of support on the net sending lots of hugs x

 

[Nic1107]

I have a Ventricular Septal Defect I have somewhat low endurance for cardio exercise, but I also smoke and never exercise so someone who actually takes good care of themselves would likely be in much better shape than I am. It's really never affected my life in any significant way, I've never had a health scare, and I've never needed surgery although the hole didn't close on its own (they often do). I'm not sure how often I had echocardiograms as a baby, but as a kid I only needed to go every two years for a check-up. Actually, I still supposed to go every two years but I haven't been in nearly a decade

Try not to worry, hun- any heart defect sounds scary, but VSDs are surprisingly common and are much more likely to be nothing serious.

 

[Laucu]

Hey there, I can totally understand your worry, it is very scary Try not to worry, like others have said they are very common, and the fact that it doesn't affect her is a very good sign indeed. The docs won't operate or interfere unless they need to.

Emma was disagnosed with a moderately sized VSD when she was about a week old. The cardiologist said that if it didn't start to close then she would have to have surgery... luckily, it is now a lot smaller and we just have yearly appointments to keep a check on it.

One of my best friends had the same thing and it didn't fully close up until a couple of years ago - when she was 28! She was always fine although tried to use it as an excuse to get out of PE all the time!!!

 

[Siyren]

hey sweetie- my little girl has absent pulmonary syndrome, she should have a vsd with this but she doesnt for some reason- which is good.
so if you ever need to talk feel free to pm me,
lyssa is now 20 months old and she has a very leaky valve, but to look at her you would never know x

 

[Lyndz]

Whoa, thank you for the amazingly kind words and experiences ladies, it made me cry! Strange the forms you draw strength from in difficult times! Thank you all so much, and thank you to the ladies who have shared their experiences with this and other heart problems

I've a (slightly) clearer head about it today. Like many have said, at least we know and it can be monitored, she doesn't have symptoms and she's an amazingly healthy child so i'm looking on the positive side. Think i just scarred myself alittle last night, stupid google telling me about heart failure!

Thank you once again ladies

 

[LankyDoodle]

I'm sorry to hear about this; it must be really awful and hard to take on board.

I don't know anything about holes in the heart, but it sounds like you are being well looked after by the medical people.

XX

 

[Ozzieshunni]

I always try to respond to other heart mommies on here. My LO has a heart block (rare in infants) so I understand what it's like for a doctor to tell you something is wrong with a vital organ in your LO's body. It's good that your LO is being monitored and the doctors will do what is best Make sure to ask lots of questions if you are unclear on ANYTHING! I found it helps to keep a little journal in case you forget anything

 

[Seraphim]

I may have this totally wrong, but I was watching a programme the other week and was surprised to see we all have an open hole in our hearts while we're in the womb and it's one of those things which kicks in when we're born and take in oxygen, the hole's meant to close... might make it seem slightly less scary than if its just a random hole?

Hope all goes well for you

 

[TennisGal]

Big

A friend of ours little girl has a heart murmur, and I think her docs said she had a small hole when she was younger that appears to have closed. It doesn't hold her back at all...she's nearly 11, and one of the most sporty and active kids I know! I can always ask some more questions, as my memory may not be too sharp.