saggarmakersbottomknocker would you mind talking to me about balloon surgery please?

[Ebb]

Ds is 16mths and has a moderate aortic stenosis. We see the consultant again in December. Just recently I've started seeing signs that he might need the balloon procedure soon.

I understand it's fairly straight forward but I was wondering if you would mind telling me exactly what happens? How long does the procedure take? Will Ds have to stay in hospital for a while afterwards? How do they feel afterwards ( although obviously that will vary from child to child ) and what sort of after care do they need?

I really hope the consultant says come back in 6mths but I'd like to sort of prepare myself just incase. It's not easy is it?

Thankyou so much if you can help.

Hello Ebb.

Hope I can help. My dd has had a couple of balloon dilatations done; the last one just this Spring. She's almost 16 now though so my memories of the one when she had when younger are a little vague.

Has your ds ever had a cardiac catheter? The balloon dilatation is exactly the same except that they obviously do a little work whilst they're in there. It usually involves at least a one night stay, it depends whether the hospital do preadmission separately or the day before/of the procedure. They are usually away from you for a couple of hours for the procedure. The op itself involves the passing of a catheter wire up to the heart through the femoral artery in the groin. Depending on the access they need and which areas of the heart they want to reach, one or both sides are used. They usually do lots of measurement of blood flow as it's much more accurate than on the echo. If they need to stretch the artery/valve then they pass a balloon up the catheter and carefully inflate it. Once done they withdraw the wires. Usually the incisions are very small and don't even need to be stitched. They have to wear a pressure dressing for a few hours and the area can be quite bruised.

Afterwards they are usually kept overnight and have the usual obs done - temp, BP, Sats etc. Also they regularly check the pulses in the feet to make sure the blood flow is OK through the femoral artery. If all is well it's home the next day. Sometimes they do another echo shortly after to make sure the area has stayed stretched. It is quite straightforward although GAs are always a worry aren't they? Sometimes (although not often) they take them off for a possible dilatation and then don't do it because the measurements are OK - it happened the other way for dd this time as we were just expecting a diagnostic cath but the pressures were quite high so they went ahead and did the balloon. dd doesn't cope very well with the GA - it makes her quite sicky and she seems to dehydrate very quickly. Some children are up and about really quickly though.

My experiences are with pulmonary issues rather than aortic but I expect the basics are the same. Is your ds showing some symptoms now?

Thank you so much Saggar.

I think Ds is displaying a few symptoms but on the other hand, I'm not sure if I'm seeing things that I wouldn't worry about if I didn't know about Ds's heart if that makes sense.

He just seems to get tired a bit more easily and he seems a bit paler and more irritable. He's also teething at the mo so that could account for all the above.

He's not had a cardiac catheter. Just the usual ECG and ECHO etc. The consultant has said he will need the procedure 'soon' but there was no change in the size of the valve last time we saw him ( July ) so it was 'review again in 6mths'. Obviously the bigger he is, the better. I keep trying to fatten him up but he's a fussy little beast!

Do any of your other dc's have heart conditions? I'm only 5wks with Dc 2 ( and not sure if it's a sticker ) and I guess I do wonder if I stand more of a risk of having a second child with a heart condition.

It's really helpful to hear about the procedure. Thank you so much.

Congratualtions Ebb. dd is my youngest. I have two boys who seem fine - although I've not had them checked. Are you going to have an anomaly scan or do they do them anyway these days (I'm a bit out of touch).

dd has been my most fussy eater - really pretty grim when she was small but I do know what you mean about getting them a bit bigger. You just feel that they can handle it better don't you? I used to find it quite tough - the watching and wondering - it gets a bit easier as they get older and can tell you how they're feeling rather than second guessing all the time. The docs obviously want to leave things as long as possible but do the procedure before any real damage is done.

Is he on any medication?

No he's not on any medication and is, generally, a typical busy little toddler who, at times, has surplus energy! It's just been the last couple of weeks, I've just started to get these feelings that he might need the procedure soon. I totally agree that the watching, waiting and wondering is very hard.

The anomoly scan is at 20wks. Ironically at Ds's 20wk scan the sonographer picked up an issue with his heart. Something to do with the blood flow but it was a new up to date scanner so all new to her and Ds wasn't in the most cooperative position. It was such a long, stressful weekend waiting to see the specialist on the following Monday. The specialist gave us the all clear. I guess at that stage it must be hard to spot. My GP picked up a heart murmur just before Christmas last year and he was diagnosed in Feb. I do believe you advised me then when I posted.

I know this thread is a bit old, but I haven't found any others. My dd has just been diagnosed with pulmanory stenosis and they have said they want to do this catheter thing within the next few months- she is 2 and a bit. I am worried sick- we thought the murmour was probably nothing so this is a shock. Ebb, has your ds had to have this done ? I'm dreading the whole GA and recovery and whether she will live a normal life after even if it is successful. I don't want her getting upset or over excited about anything now- i was bad enough before about being neurotic !

Hello madeleine. My dd's balloon catheter was in relation to pulmonary stenosis as I said above. She's had several catheters as she has other problems aside from the stenosis, this last balloon was done during a catheter that was initially for investigative purposes.

It isn't very nice admittedly putting your child through a GA but all of the children's heart units are very experienced and make it as easy as possible for both your and your child. The success rate for pulmonary stenosis is very high and your dd will do just fine both during and after surgery I'm sure. Chilren of that age generally take it all in their stride