Emilee Grace

DORV, VSD, D-TGA

Emilee Grace

Our daughter Emilee Grace is a very special little girl. Just her smile says everything. She has 2 brothers Josh (heart-healthy), Justin (HH) and a sister named Ashley (HH). They are all wonderful kids

Emilee was born with a complex form of DORV (double outlet right ventricle). I had no prior knowledge of congenital heart defects. We found out when she was two weeks old seeing that she started showing signs of failure to thrive. I sometimes think if I would have dealt with her diagnosis better if I would have known about it before her birth.

Emilee has had two surgeries to repair her defect and will need 2 more to replace the conduit in her right ventricle. She also had a fundoplication and g-tube placed when she was 2 months old. She is still g-tube dependant and hopefully that will change soon. That battle is a whole other story.

Emilee had her open heart surgery in Michigan, performed by Dr. Bove (wonderful surgeon). She has full function of her heart now and is only taking Lasix and Prevacid.

It is truly amazing watching her from day to day. She is so strong-willed and a delight to call my own. I would not change a thing about her and yes I would not want her heart any other way.

— Beth and Mike, Emilee's Parents, and brothers Josh, Justin and sister Ashley (East Tennessee)

This article was last updated on July 19, 2005

Born: December 2, 2003
Diagnosis: Double-Outlet Right Ventricle (DORV), Ventricular Septal Defect (VSD) and Transposition of the Great Arteries (D-TGA)
Treatment: PDA ligation and pulmonary band 1-04; Fundoplication and g-tube 2-04; Rastelli and arterial switch 11-04