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Eliana Grace Hoffman

January 17, 2018 – April 2, 2018

Eliana Grace Hoffman was born with a severe congenital heart defect, Hypoplastic Left Heart Syndrome, on January 17, 2018 at the Children’s Hospital of Philadelphia. She was diagnosed prenatally at twenty weeks and was being closely followed by the cardiac specialists at CHOP. On January 17th, she was delivered three weeks early when doctors performed an emergency C-section after a concerning ultrasound. The doctors were relieved when Ellie came out screaming and so everything seemed as expected. However, the next morning she went into cardiac arrest and coded twice which caused her to be urgently placed on ECMO bypass (which ended up lasting for two weeks) and a ventilator (which she never came off of). Tests revealed complications they hadn’t seen in utero: two gaps in her esophagus and a nearly interrupted aortic arch. Doctors puzzled over what to do for several days as this caused significant complications. Finally at ten days old, Ellie went for her first of several surgical procedures: PA Bands placed on her heart, one of the esophagus gaps closed, and a G-tube inserted. This was also the first time that I was able to hold Ellie so it was quite an emotional day.

After that surgery, Eliana started retaining too much fluid and soon her five-pound body had three pounds of extra fluid. On February 4th, Karl and I were awoken in the middle of the night and told that Ellie wouldn’t make it much longer. After several hours in my arms, she miraculously improved and later that day they were able to place her on dialysis which helped her greatly. Over the next six weeks, Ellie had so many odd things pop up that the doctors started referring to all the “curveballs” she was throwing at them as “the Ellie effect”.

At eight weeks old, Ellie finally was stable enough to undergo the Norwood procedure which is the open-heart surgery most HLHS infants have at a few days old. Near the end of the surgery, she was losing too much blood and for the third time we were told she wasn’t going to make it. But again, she was blessed with a miracle. Her chest had to remain open for longer than expected and a second round of dialysis had to be started, but that last week the doctors really thought she was on an upswing compared to everything she had gone through. Sadly, her heart was just too sick and for two days she went through all types of arrhythmia and crazy swings in blood pressure. On April 2nd, Karl and I were there when God called her Home.

Ellie was a sweet baby and one of the last gifts she gave us was her first laugh. Though Karl and I never heard her voice, it is that face we want to remember the most. She was so strong and brave as she literally fought every day of her life. Some of Ellie’s favorite things were holding Daddy’s finger, bedtime stories with Mommy, and being held (though all her equipment made those times too few). She enjoyed being calmed by her pacifier, hummed lullabies, and grabbing onto her G-tube.

The Ellie Effect was created to honor Ellie’s life and to be the difference for those in need, especially those in the heart defect community. Our time with Ellie was too short, but through this organization her legacy continues on.

- Kim Hoffman, Ellie’s Mom