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Anyone affected by Tetralogy of Fallot?
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Anyone affected by Tetralogy of Fallot?

I just gave birth to boy/girl twins 8 weeks ago. My son was diagnosed with Tetralogy of Fallot and underwent opne heart surgery on the 2nd day of his newborn life. He is home and doing well with feedings and gaining weight. His subsequent surgery is scheduled around 7-12 months. Want to see if anyone else is dealing with this congenital heart issue with their young child. The prognosis is positive and that he should lead a healthy and normal life. Would love some support from other parents. Thanks so much!
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Hi, my husband and i have an 8 year old son who was diagnosed at birth as having TOF, like most other parents we were shocked and afraid of the future and what it held.
Our son had a shunt fitted to widen his valve in the first year of his life following what is termed as "a blue episode".
The full corrective surgery followed a year later ( waiting seemed like a life time).
I remember  when asking the consultant of what the future might hold in the way of health for our son him saying " although he may take part in a race, probability is he will never win one", we proved that suggestion wrong in many different races eg running, go-karting, swimming etc.
It is good to keep an eye out for recent research results which is what we do, research shows that children who have had cardiac surgery within the early years can develop at a slower rate, also motor skills can be affected.
Our son lives a normal life and takes part in all activities enjoyed by other children his age.
It is our love and support along with the knowledge that he special and has endured so much in his life so far which helps us through the tough times.
I do hope all goes well for you, i know it is important to have support. Your child like mine will probably be the only one within their school who will of been through major cardiac surgery and so we must act as their ambassadors. Pam
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