My son was also born with Tetralogy of Fallot, and it is the hardest thing to have to cope with knowing there is something wrong with your child.
Having a baby is ment to be the best feeling ever, but when your child is taken off you and in Intensive care, its really hard to deal with. I now have post natel depression, becuase i just could not except the fact, that My baby had this awfull problem.and all i think is Why my baby??
Jack has had lots of ECHO scans, and his weight gain is a real problem, The local hospital are awfull, and we now deal direct with Cardiff hEath hosptial, where they have all the specialist, Cardiac nurses, Cardiac wards, and they are absoulty fantastic.
Jack is being NG tube fed, due to poor weight gain, as he was not taking much from a bottle, He has been in and out of hospital since he was born, and he is only 14 weeks old, Jack last week weighed 10lbs 2, so he is now putting weight on lovely. He was born 7lbs 9 1/2, but lost alot of weight a week old when he had colic. I am really confident everything will go well when Jack undergo's Open heart surgery, to correct everything. After speaking to other parents on the Cardiac wards, im really confident, Jack will be put in Bristol hospital for his surgery.
Jack is such a happy child, He started smiling when he was 3 weeks old, (and NO it was not wind) Thats all he does is smile, and kick his legs, The doctors cant get over how active he is, I love my little boy to bits, and would not change him for the world, just wish he would put more weight on though, becuase he has to be 20 od lbs to undergo the surgery, He is on prescribed milk Infantrini to help with this weight gain.
Being told though, if he has a spell it could kill him is very scary, we only found this out when Jack was 8 weeks old, So thank god, he didnt have one before or yet. But at least now, we know what to do if he does. I would like to know how The surgery has gone with other parents who baby's have tetralogy of Fallot.