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Lily, 2006

Lily, born 2006

My husband and I were notified during our 20 week ultrasound that something was not right with our daughter's heart.  We were told to come back in another four weeks for a follow up ultrasound. We did and found out that our baby's left ventricle appeared to be underdeveloped and there was also a possible coarctation of the aorta and a VSD.  We were referred to Dr. Rychik who told us the best case scenario would be a VSD repair, and the worst base scenario would be Hypoplastic Left Heart Syndrome which requires a 3-staged surgery.


Our daughter, Lily Jane, came into this world on February 25, 2006 one day after her due date.  She was 6lbs. 6 ounces at birth, and the most beautiful baby we have ever seen. She was transferred to CHOP four hours after her birth by emergency transport where a diagnosis of HLHS was made.  


On February 28th, Lily had the Norwood procedure performed by Dr. Spray.  She came through the procedure with flying colors and was recovering nicely.  After a few days of low oxygen saturation levels it was found that there was a kink in the shunt.  Lily was taken into the cath lab where a stent was placed within the shunt to allow better blood flow.  At the end of the procedure, while the catheters were being removed, Lily's external iliac artery was ruptured requiring emergency abdominal surgery to clamp the artery and save our daughter's life.  Lily again pulled through. She was discharged from CHOP on March 25, 2006 and came home with us for the first time.


On August 7th, Lily had her stage two bidirectional Glenn procedure.  After this procedure, she developed a heart arrhythmia which was later diagnosed as ectopic atrial tachycardia.  Lily was discharged one week afer her second surgery.


Since her second surgery, the issues with tachycardia have continued requiring a variety of anti-arrhythmia medications, hospitalizations, and catheterizations.


On December 7th, Lily had a pacemaker placed.  She is currently taking Amiodarone which has been controlling her tachycardia.  We are hoping to avoid needing an ablation done anytime soon which would be the next step for Lily if the medicine stops working. 


My husband and I are grateful for every day we spend with our daughter, Lily.  She brings so much joy to our lives. We would like to thank Drs. Spray, Rychik and Donner and all the other wonderful doctors and nurses who have taken care of our daughter since birth.  Just looking at our daughter each day reminds us that there is hope, so never give up the fight!


Story by Lily's mom, Julia - Pennsylvania

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