Heart Children roll call

Hi Angelina, I'm not sure if it changed as they get older - but I think the risk is probably lower the bigger they get. It has something to do with the time they have to be on bypass too I think. It freaked me out when they told me, so I definitely remember that part of the pre-op talk!

The risk is higher for neonates on bypass, I remember that chat. Milla had streaking in her brain tissue - likely as a result of bypass, but it has had no effect on her development - which is the common outcome.

Hi there. Haven't used this forum before but was searching for some answers and came across it. What a great idea! My daughter was born in January and was diagnosed with pulmonary stenosis at 9 days old. She underwent a catheter balloon procedure the following day to stretch it but they couldn't get it to normal size so we're waiting for them to try again in the coming months when she's bigger. She has regular checkups at Starship but at the last one it seems they didn't get a very good ECHO so next time they want to sedate her. She'll be 3 months old. I'm worried about having to sedate her and the effects, let alone not being able to eat beforehand - her appointment is mid-morning. Can anyone provide any insight? Last time we had a trainee doing the ECHO which we found frustrating as it seemed to take longer then previous ones - we had thought our daughter did really well at being still given all the mucking around that went on, let alone the 40min wait to be seen after seeing the nurse. How can they expect such young babies to stay awake for such a long time?! Any helpful hints would be much appreciated!

I hadn't realised what my username was! Shame I can't change it. Anyway, thanks for your reply. At first I was ok with the thought - after all, you have to trust the docs etc are giving the best advice - but part of me wonders if sedation is necessary. Am I just letting them put drugs into her little body unnecessarily? As her parent, shouldn't I be trying everything else first? We really believe the biggest cause of her moving during the ECHO was that it took so long as the guy took ages to get started and then seemed unsure of what he was doing and how to handle a baby. We then had to wait for someone else to come in and check what he'd done. It just seemed unreasonable. We also had a long wait as the nurse never seems to be able to get a blood pressure reading (first appointment she just gave up. - the cardiologist did it in a matter of seconds tho, and second appointment she got 3 different readings and then just used the one closest to her records) - so she'd been awake for well over an hour before we even started the ECHO (her awake time is usually 45mins or so). Are there any alternatives to the sedatives? And what are the chances they'd maybe do the ECHO when we first arrive - and other tests afterwards. Any ideas on how to keep a young baby still (she won't take a dummy). Perhaps feeding from a bottle?

My daughter had a sedated echo in January, she was 8.5 months. It was fine I just wrapped her up and she went off to sleep then they did the echo she woke towards the end and tried to 'help' lol by grabbing the wand. She wasn't groggy or out to it though but I think some kids can be grumpy after it. Her appointment was 8:45 so not too long to wait for food. They tried to do an echo at our local hospital when she was about 4 months and it was so hard she screamed and wriggled which made it much more difficult to get good pictures.

Thanks everyone for your replies. Had the ECHO last week and the sedation was a breeze! She didn't even grizzle at not having her usual feeds! She did wake up cranky - as though she was really tired - and i had to breastfeed her while they finished the ECHO and ECG, but went back to sleep about 30 mins later for a few hours, and continued to be quite sleepy over the next day or so but otherwise was all good. Based on the results, they've booked her in for another operation next week - so I guess I'm pleased I know they got good images and could make an nformed decision,
Thanks again.

Good luck Aims one

Check out your new ticker RJ

Hi again. Just wondering if anyone has experience with travelling internationally with children with heart conditions. Does anyone know of an insurance company that covers pre-existing heart conditions? And if travelling to Aus, are they covered under their public system anyway if we're Kiwi citizens? There's a good chance we'll need to travel in the future so just trying to get some info.
Thanks

Oh hi again - I just re-read above - how did her op go?
hope it went well. I guess with her condition you would need to talk to your cardio, as its completely different to our situation.

The travel insurance we got included anything other than pre-existing conditions. But yeah, the cardiologist should give you a better idea and hopefully put your mind at ease.