AVERIE'S HEART
A mom of another tetralogy of fallot baby wrote this and it is a perfect explanation of Averie's heart condition:
When my mom was 26 weeks pregnant, my parents found out that I have multiple congenital heart defects known as Tetralogy of Fallot with Absent Pulmonary Valve (TOF/APV).
TOF/APV is a complex constellation of congenital heart defects (CHDs). TOF (or "tet") is usually moderately straightforward as far as congenital heart defects go, and relatively "easy" to repair with open heart surgery, generally when the baby is about 6 months old, but for me will be a lot sooner (as described below). Tetralogy consists of 4 problems:
1) a hole in the wall separating the right and left ventricles (ventricular septal defect or VSD) which mixes the oxygen rich blood (red blood) coming back from the lungs with the oxygen poor blood (blue blood) coming back from the body;
2) overriding aorta (aorta shifted over too far);
3) right ventricle being too big from pumping the extra blood; and
4) stenotic (too narrow) pulmonary valve (valve between right ventricle and lungs).
These conditions are correctable with open heart surgery. But the complicating factor for me is that I also have an "absent" pulmonary valve, meaning it's not properly formed and doesn't work the way it's supposed to (one-way to the lungs). So the blood goes back and forth ("regurgitates") and makes the right ventricle pump extra extra hard out to the lungs (in addition to already pumping hard because of the VSD). Also, the extra blood makes the arteries going to the lungs way too big ("dilated") so that it has the potential to cause severe airway constriction and/or breathing problems.
These problems are also "fixable" but not necessarily a "cure," because the pulmonary valve needs to keep being replaced as I get bigger. Hopefully in the future this will be done with catheterization procedures, but currently it is still done with open heart surgery.
When my mom was 26 weeks pregnant, my parents found out that I have multiple congenital heart defects known as Tetralogy of Fallot with Absent Pulmonary Valve (TOF/APV).
TOF/APV is a complex constellation of congenital heart defects (CHDs). TOF (or "tet") is usually moderately straightforward as far as congenital heart defects go, and relatively "easy" to repair with open heart surgery, generally when the baby is about 6 months old, but for me will be a lot sooner (as described below). Tetralogy consists of 4 problems:
1) a hole in the wall separating the right and left ventricles (ventricular septal defect or VSD) which mixes the oxygen rich blood (red blood) coming back from the lungs with the oxygen poor blood (blue blood) coming back from the body;
2) overriding aorta (aorta shifted over too far);
3) right ventricle being too big from pumping the extra blood; and
4) stenotic (too narrow) pulmonary valve (valve between right ventricle and lungs).
These conditions are correctable with open heart surgery. But the complicating factor for me is that I also have an "absent" pulmonary valve, meaning it's not properly formed and doesn't work the way it's supposed to (one-way to the lungs). So the blood goes back and forth ("regurgitates") and makes the right ventricle pump extra extra hard out to the lungs (in addition to already pumping hard because of the VSD). Also, the extra blood makes the arteries going to the lungs way too big ("dilated") so that it has the potential to cause severe airway constriction and/or breathing problems.
These problems are also "fixable" but not necessarily a "cure," because the pulmonary valve needs to keep being replaced as I get bigger. Hopefully in the future this will be done with catheterization procedures, but currently it is still done with open heart surgery.
1 comment:
We are praying for you guys, God is there with you and we are here for you..if you ever need to talk or someone to listen! Anytime! Love you guys
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