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Any advice please re heart murmur- sorry to post on this board

(18 Posts)
NewChoos Tue 31-May-11 21:53:59

but I haven't had any replies on the child health board.

DS 9 weeks was reviewed today by 2 Drs who heard a heart murmur. They have said likely to be a VSD which is common in babies and hopefully will close on its own. We have been referred to the hospital and have an appointment at 1100 tomorrow so he can have further tests. Has anyone any experience of this?

Am very stressed......

Thanks

TruthSweet Tue 31-May-11 21:57:22

I'm sorry I have no experience in this but I do have experience in waiting for cons appts/test results so have a hand hold and a little <squidge> in solidarity.

organiccarrotcake Tue 31-May-11 22:04:36

Newchoos you could try phoning the NCT shared experience line on 0300 330 0774 who would be able to put you in touch with people who have experienced this. It won't be open until tomorrow though I'm afraid.

Support and a hand hold from here, too. xx

ThisisaSignofthetimes Tue 31-May-11 22:08:08

Hi my DD was diagnosed with this at about 9 mths old. We went for 6 month check ups for about 3 to 4 years, where they scanned her heart and weighed her. They told me that it was very likely that it would heal over itself but that if it didn't it was so tiny that it wouldn't impact her but that if she was ever to have dental surgery she should have an antibiotic prior to treatment as there is a small chance of infection. She is now a very robust 10 year old. Please don't worry, as long as your son is growing as expected at the check ups this shouldn't have any effect on him. To be honest I don't know whether my daughter vsd has closed, until I saw this thread I hadn't thought about it for years!

VerityBrulee Tue 31-May-11 22:14:40

I have a heart murmur. I am 42 have 3 dc and it does not affect me in any way at all. The only consequence of the murmur is that I need to take anti-biotics before any dental work. I had lots of tests done when I was pg with dc1 but cardiologist said that the murmur would have no implications for the pregnancy or delivery.

Please try not to worry, heart murmurs are very common, and many go undiagnosed so lots of people lead normal lives totally unaware they even have one.

NewChoos Wed 01-Jun-11 05:51:07

Thank you for the messages - I am trying to be calm.
I had noticed his breathing is fast a few times and mentioned it to the midwife, hv & gp and they all thought it was fine although the gp agreed it was yesterday. Have also have noticed he has cold hands (but just thought he was like me....) but really wish I had pushed this more now sad in case this is significant.

YogaMummy2B Wed 01-Jun-11 06:56:07

Hi NewChoos
I'm in same boat! My DD is 8 weeks old and went to see Paediatrician last week about reflux. He had a listen to her chest during the appointment and identified a murmur.
I am stressed to the max and we don't have appt to get it checked out until next Tuesday.
Her breathing is funny right now as we are both loaded with the cold, but I keep worrying it's not the cold causing it. Also, around her lip area goes very slightly blue throughout the day. First noticed this when she was 3 days old.
It's so stressful being a Mummy!
I hope all is well at your appt. If it helps, Paed said that 90% or more of murmurs turn out to be innocent. Everything crossed! xx

JiltedJohnsJulie Wed 01-Jun-11 07:23:29

Yes, but it wasn't picked up so early. We took DS to the GPs and as he was chatting to us he asked us about his heart murmur, it was the first we'd known about it.

He is 7 now, the murmur has closed by itself and he is a strong, strapping lad.

Try not to worry too much, in all probability it will just close and hope the appointment goes well.

Wallace Wed 01-Jun-11 07:28:20

Just replied on Health topic, then I saw this.

Good luck for appointment today, I will be holding your hand for you. Do you have anyone who can go with you?

NewChoos Wed 01-Jun-11 07:28:39

yogamummy it's awful isn't it, hoping all goes well with DD. Can you ask for an earlier appointment? You could take her back to gp for a review, if they are concerned they may arrange for you to be seen today/tomorrow. This is what happened to us yesterday. Does she feed well? apparently weight gain is a good sign (DS on lap feeding now smile

I am so so scared, DH has gone to work for 1 hour, then will come home for the appointment. I am so scared things will be very wrong, DS is the most wonderful thing and we both can't believe we were so lucky to get him.

beamel Wed 01-Jun-11 09:51:10

Please try not to worry (yeah easier said than done I know).
It is extremely unlikely that this is anything serious. Many small babies have heart murmurs (VSD, flow murmur etc.) and they rarely turn out to be anything serious. Your doctors are just being sensible and cautious in getting him checked out. Fast breathing and cold hands are normal for babies of this age. (Thats why we are told to feel chest/back when checking if they are too hot/cold).
I welled up a bit on reading your last sentence, I really feel for you but it will be ok. Make sure you come back and tell us how the appointment went.

Daisy03 Wed 01-Jun-11 09:57:34

Please dont worry, my excitable 3 month old just saw a consultant last week about the same thing after it was picked up by the GP, he basically said as she is developing normally its probably innocent and if its still there in 3 months they'll do an echo, but its very common.
I was so upset when first diagnosed, its the word 'heart' that does it but hopefully everything will be ok

Wallace Wed 01-Jun-11 20:18:48

how did it go? xx

NewChoos Thu 02-Jun-11 08:08:08

Thanks for the messages. We spent most of the day at the hospital, our DS has been diagnosed with a ASD and a VSD. They are more worried about the VSD and we will see the cardiologist next week. We have been told he may need surgery, should be in no immediate danger although his breathing is laboured, he gets short of breath and is working harder than he should have too sad
Finding it hard to get things in perspective, we are both devastated (although I know people have far worse things). Also feel like I let him down as I knew his breathing was wrong and should have pushed the point.
I am so scared we will lose him, can't stop crying but know I have to manage better so I can look after him. It feels like a nightmare is coming true and I would doing anything for this not be happening. I am very worried about his breathing and may need to be a mad stalker and call the ward later to check on this. x

Wallace Thu 02-Jun-11 15:23:59

oh poor you. we have been there if you have any questions. also try the forum at heartline.org.uk/

YogaMummy2B Thu 02-Jun-11 17:20:25

Oh NewChoos how awful and stressful for you. Just do what you need to do to get through. If that means turning into a mad stalker for a while then so be it!
Lots of ice cream and baby cuddles are called for.
I am very sure you would be with the cardiologist much sooner if there was a concern for his welfare.
I spoke to my GP today and he had a listen and couldn't hear the murmur the Peadeatrician picked up, so still going for appointment on Tuesday next week. Horrible waiting game!
I'm sure nothing much anyone says can help you to stop worrying right now, but as you said you need to look after your precious bundle, so make sure to look after yourself and try to sleep.
X

saggarmakersbottomknocker Thu 02-Jun-11 17:37:32

NewChoos - my dd has a pretty complex heart defect and like Wallace I would recommend the message board at Heartline. Come over if you need support.

It's a huge shock for you and a steep learning curve but be assured that if they thought your ds was at any immediate risk then they would have him in straightaway. Do call the ward if you're worried though. The main thing that gets them out of breath is feeding as that can be quite hard work so feed little and often if you can.

Thinking of you.

saggarmakersbottomknocker Thu 02-Jun-11 17:38:32

Sorry - should have said - Yoga, hope you get the all-clear next week. Some babies do have innocent murmurs that come and go especially when they've been unwell.

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