Help me help my neice Tetralogy of Fallot? - Heart Disorders Message Board

stacester · 03-09-2007, 08:35 PM

If anyone has any information on Tetralogy of Fallot with Absent Pulmonary Heart Valve please help me out. My neice born 16 years ago was diagnosed and operated on at nearly two years old. She has made it this far, she's a blessing from God. Only now she needs reoperation. Her heart is VERY enlarged, and she is having 6 rapid Heart rate "episodes" every hour. We just had the 24 hour holter thing done. The doctor says now we need to watch for signs of a heart attack....dizziness, pain, shortness of breath, etc.. HUH??? She is a teenager living with it, never dealing with it, til now. She's freaked! Me too!! She needs me,we're like best friends...have been her whole life.. and I need to help her deal and give her "Non- medical" explanations and help through this. I'm not sure how the doctors are going to approach the operation, but of all the searching I've done the outcome seems, well, scary. Does anyone know ANYthing about this condition? I know it's very rare. Thanks for listening.

chathamdb · 03-14-2007, 10:06 PM

Hi Stacester,

My husband had Tetrology of Fallot repaired in 1976. He was 2y/o. They were considered the "blue babies" back then b/c they would turn blue around their mouths from not getting enough oxygen.
He had a pulmonary valve replacement 3 years ago b/c his valve was collapsing. He had the dizziness, SOB, palpitations. He is 34 years old. He is in Congestive Heart Failure now from his heart being overworked for all those years. He takes medicine everyday. He is on disability. I thank God for him everyday. I wish your niece the best of luck. God Bless