life with absent pulmonary valve

my daughter birthed 1994 with TOF WITH ABSENT PULMONARY VALVE got operated as "total correction" in 2002 without putting valve. after the operation she grownup very fast with nice physic,complexion,Now she is 17+ yrs.without much knowing of her desease .Now she wants to know her previous problem as she is not aware the feelings of healthy person and she also feels as quite healthy .
your valuable advice is solicited   what should be our next step in all aspects.

[Jeffrey R Boris, M.D.]

Dear Guptak,

Tetralogy of Fallot with absent pulmonary valve is a complex cardiac defect.  Although she had a repair at age 7-8 years, it is unclear to me how much over- or under-circulation her lungs got.  As well, I am assuming that they did not place a valve in the pulmonary position.  The long term outcome with patients with tetralogy of Fallot without a functioning pulmonary valve, whether they have absent pulmonary valve or not, is to have progressive right ventricular enlargement, arrhythmias, right-sided congestive heart failure, exercise intolerance, and earlier death.  Therefore, even though she may feel good and look good, her heart is not fixed--there are many complications for which there needs to be surveillance.  It is important that she be evaluated by an adult congenital heart disease (ACHD) specialist.  She should NOT be evaluated or managed by a regular adult-medicine cardiologist.  Finally, it is important that she not only know of but also understand her heart defect and the long term risks and outcomes associated with it.  You may need to travel to find an ACHD specialist, but it will be very important to have her seen for this.