Pregnancy & Birth Clubs <
06/06/2013 at 21:40
Oliver had his echo scan today totally by chance as the cardiologist was on the ward for another baby. It revealed that his heart murmur is a little more sinister than suspected and he actually has a hole in his heart.
I know nothing about it and the drs aren't saying much. It's 3.6mm which is small, but equally his heart is teeny tiny ATM. It could close, it could get bigger, we just don't know.
does anyone have any experience of either having a hole in the heart themselves, or their lo having one? Thanks xx
06/06/2013 at 21:46
I have experience of nursing but no personal experience so not sure if I am much help. Feel free to pm/fb me
06/06/2013 at 21:49
Not mine but friends of ours on scbu have twins who both had holes in the heart. One successfully closed without intervention by about 12 months, one had surgery at about 18 months IIRC. Both were signed off cardiac care by 3 years old and are healthy 4 year olds now. When they have a hole it basically allows some of the blood to go back into the other side of the heart rather than being properly pumped through.
I think small ones usually do correct themselves with time.
Sorry you're going through such a time of it at the moment, hope his is small enough to heal itself
06/06/2013 at 21:55
My niece had a hole in her heart, caused her no problems at all, and had closed by the time she had a check up at 12 months. I understand its quite common, and the small ones correct themselves without any intervention. xx
06/06/2013 at 21:57
No experience, but just wanted to put my hand out for holding, if you want/need. You know where I am if you need *anything* - cake, a visitor etc etc.
Will DVH be able to keep him under their care, or will he have to be referred elsewhere?
06/06/2013 at 22:04
I don't have any experience but wanted to offer a hug and say i hope it's one that heals itself very quickly. x
06/06/2013 at 22:32
I can only offer hugs xx Sounds like there are lots of people here who can advise though
06/06/2013 at 22:51
Another who just has hugs to offer, and is here for support xx
07/06/2013 at 06:38
A big hug for you. I don't know if it is the same at all but A had a PDA (I think that it what it was called) when she was born. It closed up on its own after a while. If it hadn't of closed I think they may have had to operate.
07/06/2013 at 07:44
Thanks ladies xx
Mossy I think the one Oliver has is VSD, it's a hole between the two lower ventricles. Heartnurse, once I'm home and an use the laptop etc, and my brain has absorbed everything, and when I've stopped crying ill definitely give you a shout. Just one for now though, they said the holes in babies hearts fall in to small, moderate and large. Could you tell me what 3.6mm is...obviously the measurement in itself is meaningless as his heart is small too at the mo xxx
07/06/2013 at 07:49
No experience but big hugs to you both x
I've no advice, but couldn't read and not offer you a .
I hope you know more soon, and it's positive news from here on in.
07/06/2013 at 08:29
My H had a VSD. His dad and grandma also did .
Not sure what happened with his grandma but his dad had surgery to close it.
With H he didn't need it it just closed naturally.
We told MW at our booking in for both pregnancies, W was checked when born and had a small hole ( I think they referred to it more as a flap) but when she was checked 3 months later it had closed.
With this pregnancy I am being given an echo as 23 weeks to check.
I don't know the medical side of it or how severe your LOs is but my experience in both pregnancies has been that medical staff didn't seem particularly concerned about it. I think it is very common that it doesn't fully close before birth but I think in most cases it can just close naturally overtime. Think of it positively in that you would not have known if that cardiologist hasn't been there.
When my H was born they didn't know as apparently normally a father can't pass it on, only a mother, so he was six months old before he was finally diagnosed.
A lot of people function without even knowing they have one.
I know its not much reassurance as you obviously haven't been told if it is serious or not, but it is very common and I hope your LO heals naturally . Is there anyone at the hospital you can call for more info on the size to stop you worrying?
07/06/2013 at 08:31
sorry to hear this munchkin. I don't have any advice but I do know how worrying this is as I said yesterday my little one yesterday
my little one had a murmur. at least you have hat you're scan quickly we had
to wait 8weeks for ours.
hugs and lots of vibes to you both, your in the best place. xx
07/06/2013 at 09:05
I don't have time to write a long reply as I have to go this morning, but please know that I am thinking of you a baby Oliver. it's good that it's been picked up early.
Lots of information here
get this book www.heartline.org.uk/.../heartline-book
join the forums www.heartline.org.uk/.../forum.php
I will come back to this thread so if you have any questions let me know.
07/06/2013 at 11:30
I know you dont know me but I had a hole in my heart it was the size of a 5p and needed and surgery. im also fighting to get my daughters heart scanned. If I can do anything to help just let me know, im on the Facebook group. I hope the hole closes on its own x
08/06/2013 at 09:47
hope you saw my previous reply.
How are things today?
10/06/2013 at 11:33
Hi Munchkin. been thinking about you all weekend. how is baby Oliver?
10/06/2013 at 20:42
I am so sorry never got back to this thread Munchkin, I am here for you when you are ready
11/06/2013 at 21:27
Thanks for your well wishes everyone. I am so sorry it took so long for me to get back to the thread.
Carole....thanks for those websites.... Oliver's feeds have picked up and he is generally draining 3oz bottles every 4 hours. His weight dropped from 6lb 1oz to 5lb 8oz.....they have said to aim for a gain of 30g this week. so I find out on Thursday if we have achieved our goal. Hoping that feeding strengthens him in general and that helps him to close the hole himself.
We should have a second scan in a few weeks time to see if the size of the hole has changed. I am having trouble distinguishing if he is breathing fast (which we have been told to look out for) or if the fast breathing is caused by wind. Its very frustrating and worrying, and if I am honest I spend most of the night just watching him. Just in case. My rational mind tell me he is fine and it will close itself...my crazy emotions make me feel like he is the most fragile little thing on the planet. Of course he isn't.
Heartnurse.....I was having problems with PM here so I tracked you down via the FB group and you should have mail xxx
Again thanks for all your vibes, I expect I will need lots of hand holding later down the line xxxx
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