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Emmie

TOF, PA, MAPCAs, DiGeorge Syndrome, CVS


Emmie
Emmie
Emily Grace, or "Emmie" as she is lovingly known, is a sweet little girl from Marlton, NJ who is battling a life- threatening, complex heart and lung defect ... So far, at the age of 7, Emmie has endured FIVE open heart surgeries, and doctors are discussing more!

Emmie has spent several months at a time in Children's Hospital of Philadelphia Cardiac Intensive Care Unit, where she has suffered many complications. Several times doctors didn't believe that Emmie would make it through the night, but she is still fighting, and has been surrounded by the prayers of her church family and friends who believe that GOD heals.

During a 4-month long hospital stay from August to December of 2002, Emmie suffered a cardiac arrest. Her heart was so sick, and her heart rate got so high, it just stopped. Doctors did chest compressions and shocked her heart, and finally got her back. Praise the Lord! But the heart stopping caused severe, permanent brain damage, and many neurological problems. As a result, Emmie can no longer eat or drink, so she requires a stomach G-tube, running continuously to feed her, and several cardiac meds around the clock, administered by Mom through the G-tube.

During that long hospital stay Emmie had a FLAT-LINE EEG - NO Brain Activity. Now, at the age of 7, she has a NORMAL EEG - Praise the Lord!!! Emmie also suffers from uncontrollable vomiting episodes, recently diagnosed as Cyclic Vomiting Syndrome, which causes her lungs to fill up, and has also landed her in the hospital several times, dehydrated and very sick.

Emmie still faces more surgeries and a long road ahead of her, and she needs your prayers !! Emmie and her family thank you all for keeping her in your daily prayers. God bless !!!

— Kim & Andy, Emmie's Parents, and Siblings Kira, Elena, Erica, and Christian (Southern New Jersey)


This article was last updated on November 21, 2007

  • Born: November 28, 1999
  • Diagnosis: Tetralogy of Fallot with Pulmonary Atresia and Major Aorta Pulmonary Collateral Arteries, DiGeorge Syndrome, and Cyclic Vomiting Syndrome
  • Treatment: March 21, 2000 (4 months old): RV/PA Conduit Interposition and Right Ventricular Aorta Outflow Tract Aneurysm (surgery performed in Korea); October 13, 2000 (11 months): MAPCA Unifocalization and RV/PA Conduit Revision (in Korea); August 3, 2001 (20 months): Unifocalization of Collateral Vessels, Left Upper Lobe Branch of the PA to the Left Lower Lobe; October 26, 2001 (23 months): RPA Dilation and Stent Placement; January 29, 2002 (2 yrs 2 mos): BDA of the LPA; June 6, 2002 (2 1/2 yrs): VDA to RPA Stent and LPA; August 22, 2002 (2 yrs 9 mos): Partial Closure of VSD with Resection of Ends of RV/PA Conduit; September 8, 2002 (2 yrs 9 mos): Cardiac Arrest; September 10, 2002 (2 yrs 9 mos): Patch Closure of VSD, Removal of RPA Stent, RPA Plasty Performed, Placement of New RV/PA Homograft with Atrial Level Pop Off; November 18, 2002 (10 days before her 3rd birthday): Ladds Procedure, Appendectomy, and G-TUBE Placement


 

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Disclaimer: Our members' stories represent their own perception of their experiences, and the medical information contained within has not been reviewed for accuracy prior to publication. Stories are presented for informational purposes only, and should not be substituted for professional advice. Always consult your (child's) physicians with your questions and concerns.
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