Vivian appears to be a typical 4 year old who loves playing dress up, Elmo & Sesame Street, numbers, letters, being a big sister, and playing outside with her bike. She has a contagious smile and laugh. Everyone she meets is a friend. Sometimes it's hard to believe everything she has been through.
Vivian has
Heterotaxy RAI (right atrial isomerism) with Asplenia, Single Ventricle, Right
Dominant AtrioVentrical Canal (AVC), Total Anomalous Pulmonary Vein Return
(TAPVR), Pulmonary Atresia, Right Aortic Arch and Pulmonary Vein Stenosis (PVS)
in all 4 veins. She also has Malrotation. She has had 3 open heart surgeries; modified
Blalock–Taussig (BT) shunt and TAPVR repair at
just 2 hours old, sutureless repair (for the PVS) at 3 months old and a
bi-directional Glenn at 7 months old. In addition, she has had 13 heart catheterizations,
2 bowel surgeries and 3 g-tube surgeries and developed NEC after one of her heart
catheterizations. Because of her specific combination of heart defects, we were
given a 95% mortality rate for the first year of her life.
She has overcome
the odds, but her fight is far from over. She will require additional heart
catheterizations for many years and possibly the Fontan (an open heart surgery).
Despite everything, she is one of the happiest little girls you will ever meet.
She requires weekly therapies and her prognosis is “guarded” at best. Her family and doctors are doing everything
they can to stay ahead of her progressive conditions.
Margaret Andorf (mom to Vivian)
Margaret Andorf (mom to Vivian)
No comments:
Post a Comment