Vsd baby with PA band and ng tube fed

[Joannie123]

Hi there,
I have a 4 month old baby who has recently had catheterisation done to close his large vsd but a few days after a device was placed , we had to do an open chest surgery to remove the device as the placement wasn't great. While removing the device they placed a band around his pulmonary artery as a temporary solution hoping that this will reduce his breathlessness and allow time for him to grow before the next steps.

anyone out there had vsd baby with pulmonary artery banding ? Did it help? And how long after did you have to do open heart surgery?

Also anyone has tube fed baby due to vsd? Did u manage to wean them off ?

Any information will be very helpful as I'm going crazy trying to wean him off which is not really working.

Thanks !

Don't worry too much about trying to wean him off tube feeding, babies with heart problems often need help with feeding when they're little - his heart has to work a bit harder than other babies so he burns more calories and being breathless makes it harder to feed so he consumes less calories, so having the ability to top up what he eats is great!

He may well be much better with his band in place so be able to feed enough, if so that's fantastic, if not, you have the tube as an alternative, and the quicker he grows and gains weight the quicker he will be big enough for a full repair.

Once he has had a full repair his heart won't have to work so hard and he won't be breathless so he will be able to eat as much as he needs so shouldn't need the tube.

Rather than worrying about getting rid of the tube, I would concentrate on making sure he has good associations with having nice food by mouth - so bottle/breast feed as much as he wants, dummy in the mouth whilst he's having a tube feed so he associates sucking with getting a full tummy, once he's old enough to start weaning, wean as you normally would and so on - so while he needs the tube to grow at the moment, he knows what eating and drinking is all about once he's able to feed enough to meet his needs (that may be before he has a full repair or it may not, every baby is different)

I agree. ng tubes are great! hang onto it for as long as you can. its a help not a hindrance