Atrial Septal Defect (ASD) - DD newly diagnosed at 8 weeks

[nitnatnaboo]

DD was just diagnosed at Alder Hey. Her heart murmur was detected during testing for prolonged jaundice at 3 weeks. She appears to be asymptomatic at the moment but consultant said it may need closure before school age but that the hole is 9mm, so on the borderline for treatment.

I have no idea how worried/not worried we should be. Does anyone else have any experience of the hole getting bigger/closing spontaneously? On what I've found on Google holes of >8mm are unlikely to close on their own.

As a rule, a small ASD is unlikely to close on its own but is very unlikey to cause problems in childhood, we close them because if left alone they lead to problems in early adulthood. So she won't come to any harm with it whilst she is little, so no need to be concerned or do anything differently to with any other baby. I think they can be closed by catheter (ie going in through her groin and following the vein up to the heart with a little wire - then they put a little thing that looks like a double-ended umbrella through the hole to close it) rather than having to have heart surgery as such - they wait till school age cause these things are technically much easier in bigger people than in tiny babies!

The Childrens Heart federation is a good source of information. I don't have any experience of ASD but my DS was diagnosed with an aortic stenosis when he was 9mths so I can understand a little of how worried you are probably feeling. DS is 3 now and still hasn't required any treatment and we are now on once a year check ups at the local children hospital. I would imagine they will keep a close eye on your DD with regular checks.

You wouldn't know DS has a problem. He's full of energy and a typical noisy 3yo. He will eventually need treatment but we'll deal with that when the time comes. It is amazing what they can do with hearts nowadays.

I'm sure someone with personal experience will come along soon.

Thanks Sallysparrow and Ebb - good to know your DS is doing great despite the AS.

Just got the full letter from the orginal scan.

As well as the suspected ASD which was confirmed by Alder Hey, they said there was mild Pumonary Stenosis and that they "could not rule out" Anomalous Pumonary Venous Drainage and Anomalous Origin of Right Coronary Artery.

That seems like a lot of things not quite right

Have an appt with the Paeds in 6 weeks so I can discuss it further. Does anyone else have a DC with a similar "combo" of things?

Hi nitnatnaboo sorry you have some worries about your dd. My dd has a mixture of heart defects including pulmonary stenosis and anomalous left coronary artery. I post over on the Heartline message board. Pop on over if you feel you need some support.

Did you speak with the cardiologist after the echocardiogram or is that what you're going back for in 6 weeks? If you have any questions about the letter, I'm sure you will have, you can call a cardiac liasion nurse at Alder Hey. She'll be happy to help you. Ring the hospital switchboard and ask to be put in touch if you don't have the number.