The story behind Hearts for Emma 

The story behind Hearts for Emma

On the morning of March 28th 2011, our 12-year-old daughter, Emma, was at Beth Israel Hospital in Newark, New Jersey for what was supposed to be a quick, routine blood test.  We promised to take her out afterwards for her favorite breakfast and then on to school. This was, after all, her first blood test or for that matter any medical test. Emma did not get to school that morning, she went into cardiac arrest and was rushed to the pediatric cardiac intensive care unit where efforts to treat her required her to be put on life-supporting technologies under an induced coma. Emma, who showed no prior symptoms, was somehow battling end-stage heart failure brought about by hypertrophic cardiomyopathy. Emma was transferred to the pediatric cardiac intensive care unit at NewYork-Presbyterian/Morgan Stanley Children’s Hospital in New York City. By evening, it was apparent that Emma would need an immediate heart transplant; in the interim, Emma’s doctors and nurses were able to keep her alive through the use of life saving medications and extraordinary medical technology. Our family life was suspended too – we stayed with Emma while our older daughter traveled back and forth between the hospital and our home in New Jersey.

Our community quickly mobilized to support Emma and our family. While waiting and praying and crying in the hospital, our oldest daughter doodled on a napkin and drew two hearts intertwined. These hearts for Emma were embroidered onto purple shirts (Emma’s favorite color) by our friends and worn as a sign of love and support. Within just a few days, Emma’s school hosted an all-day blood drive. Family, friends, neighbors and people we never knew but heard about Emma and wanted to help showed up to the blood drive, which included a bake sale, fundraising, and making homemade cards for Emma. A personalized prayer blanket was made and large collages of pictures of Emma’s world were brought to the hospital to show love and support to us all. Our immediate families arrived from all over the country; we were always surrounded by them and our large community of friends. Everyone became part of the power of Emma, thinking and praying about hearts for Emma.

The world of organ donation and transplantation was brand new for us and we came to realize that there are many more patients that need organs than there are organ donors. Emma, like all patients in need of an organ donation, was placed on a waiting list – an uncertain process that may or not yield a suitable donor in time. Emma’s heart condition under most circumstances would have been fatal, but Emma refused to give up and she received a life-saving heart transplant, an act of extraordinary humanity, a gift from someone we can never meet.

Emma is active, back in school and on grade despite being required to return to the hospital for constant outpatient care and biopsies. The past few years have been both difficult and comforting. We know that there are no guaranteed outcomes; a child Emma met while they were in the intensive care unit together did not survive. Because of the experiences we have been through, and the love and support we have received, we founded Hearts for Emma to help us live every day with purpose and to give back.