tretology of fallot

[Nicolamilo06]

Looking for anyone with a special blue baby in their life ???? Really looking for information and advice for my sister who had her beautiful blue girl two weeks ago. She has been sent home and awaits surgery with just a information leaflet and not much else or much support.Anything would be of help we know the diagnoses and what it does but we don't know how it will effect her long term and after surgery into adulthood. So please any help is amazing ... Thanks again

Sorry do not know a lot about this cardiac condition but do know a girl of 11 who was born with the same defect, she has had I think 4 major surgeries and will need more, but she attends school regulary and joins in all activities.
www.heartline.org.uk offers lots of support and information, there is a forum as well ( I have a dd with a different heart defect )

Hi just thought I would reply my DS was born with two heart defects that were surgically repaired at a few weeks old and nearly two years old. He still has a couple of inconsistencies with his heart but is a very happy healthy child. I personally know of two children who have had ToF, 1 completely fine and the other minor side effects. I would recommend getting in touch with the cardiac liaison nurse who will direct to other support groups and service.

Agree with pp who suggested Heartline forum. They are great.