Purple Team: Samaria

SAMARIA - purple team.png

Samaria’s journey with a Complex Congenital Heart Defect can be summarized in twenty words-Three Open Heart Surgeries, Reconstruction, Three Heart Catheterizations, coding, CPR, doctors, nurses, specialists, feeding issues, medications, allergies, oxygen issues and HOPE. At 24 weeks into pregnancy Bonnie (Samaria’s Mother) had an ultrasound at our local hospital to determine the sex of our baby.  She was not prepared to be told our baby’s one side of her heart was significantly enlarged and it would either stay the same or get worse.  Samaria was prenatally diagnosed with a Complex Congenital Heart Defect, specifically Severe Ebstein’s Anomaly of the tricuspid valve with Pulmonary Atresia.  The right side of her heart was enlarged due to the tricuspid valve not functioning properly. We went to the Cardiac Center at the Children’s Hospital of Philadelphia.  The challenge would come once Samaria was born.  The doctors at CHOP said they would wait and see after her birth if she would be strong enough to survive surgery to reconstruct her heart.  If she fell into the 50% mortality category, she would go on the heart transplant list. Born April 4, 2007, Samaria entered the world at the Hospital of the University of Pennsylvania, stabilized, and then sent to the Cardiac Intensive Care Unit at CHOP due to her life-threathening condition.  The doctors gave Samaria a medication to prevent her patent ductus arteriousus (PDA) from closing.  After observation, the plan was set into motion.At just 5 days old, Samaria underwent the first of three surgeries at CHOP.  Her surgeon, Dr. Thomas Spray, made the right side of her heart inactive and placed a shunt to redirect the blood flow.  The road to recovery was long.  We were delighted when Samaria was moved from the CICU to their step down unit.  Unfortunately, Samaria had coded.  The doctors responded quickly and performed CPR for 15 minutes.  Our little girl was a fighter and pulled through. After five weeks from being in the hospital from birth, they were able to bring her home. We arrived home with 5 different medications and a special diet of fortified breastmilk.  Samaria had an NG tube for food and medicine.  An NG Tube is a tiny little tube that is taped to her cheek which enters her body through her nose and goes down into her stomach.  Samaria needed more calories, so pumped breast milk was mixed with concentrated formula to overcome the challenge that children with heart conditions have with gaining weight.In June, they performed a heart catheterization and were able to open up her shunt where it had narrowed.  We left the hospital with Samaria on oxygen to keep her blood oxygen levels at 80%.She had her NG Feeding tube removed in July 2007.  Five months old in August, Samaria had her second stage surgery, the Bi-directional Glenn Procedure.  The second stage surgery went smoothly and we were surprised to be sent home in less than a week.The Fontan was her third stage open heart surgery in October 2008, which left her with only two left side chambers.  The oxygen poor blood goes directly into her lungs, collecting oxygen, entering the left side of her heart before pumping to her body. Samaria is now a fourth grader who enjoys dance, Girl Scouts, and minecraft.