Hi alexsandra.

My DD is now 8 months old, she was delivered at 37+6 by CS but was doing really well at birth, she had open heart surgery at 6 days old to repair the hole in her heart and also the coarctation, we were lucky to go home 10 days after her surgery, we actually had a follow up apointment last week and her cardiologist is very happy with the repair and our appointments have been pushed out to 6 monthly which is fantastic. At this stage for us we do not have any reason for further surgery.

Have you managed to get in touch with anyone else who has the same condition, it helped me with the whole timeframe thing, that is something I struggled with most as my older DD has had a lengthy journey of her own that still continues although hers is not heart related.

Best of luck with your DD. There is one other heartkid (well his Mum) on here that I know of and we are here if you need us.