PLEASE VISIT THE MARISA TUFARO FOUNDATION’S OFFICIAL WEBSITE, WHICH HAS REPLACED THIS BLOG AS THE OFFICIAL WEBSITE FOR THE FOUNDATION.
I haven’t looked at the purple blanket since Cyndi and I brought it home from the hospital after Marisa passed away, but I think often about its remarkable significance.
Marisa was a patient for 161 of the last 214 days of her life at New York Presbyterian’s Morgan Stanley Children’s Hospital, a high-risk center which 34 years ago conducted the nation’s first successful pediatric heart transplant.
A veteran anesthesiologist said the 19-hour bypass run for Marisa’s heart transplant surgery was the longest in the pioneering hospital’s history.
With Marisa connected to a ventilator, ECMO, a dialysis machine and other medical equipment, a team of highly skilled doctors and nurses competed for space while working inside my daughter’s cramped hospital room to keep her alive. Marisa, who had already survived six open-heart surgeries, faced a greater challenge than all of those operations combined. She would spend the next 14 days on life support, the next three weeks on a feeding tube, the next 40 days in the pediatric cardiac intensive care unit and the next 73 days in the hospital only to return a month later with a diagnosis of Stage IV cancer that would eventually claim her life.A nurse practitioner, sensing the hospital-issued white blankets with red and blue trim were not providing enough comfort to Marisa as she recovered from the grueling heart transplant surgery, brought her a purple fleece blanket.
The blanket contained two interlocking blue hearts and the words “for Emma” embroidered in green on one of the corners.
I immediately recognized the logo on the blanket as that of which belonged to an organization established in the name of Emma Rothman, an amazing young lady whose remarkable tale of receiving a lifesaving heart transplant I was privileged to write through my work as a journalist.
I sensed the family of Emma, who I had the pleasure of meeting in their Cranford home while conducting interviews for the aforementioned newspaper story, was now with us in spirit. The purple blanket was a source of warmth and comfort – to both Marisa and me – for vastly different reasons.
The blanket is one of many wonderful amenities the nonprofit Hearts for Emma foundation provides for children and their families in the PCICU at New York Presbyterian’s Morgan Stanley Children’s Hospital. Other Hearts for Emma provisions from which my family benefited during Marisa’s hospitalization included gift cards to eateries in close walking distance of the hospital, a care package with toiletries, and continental breakfasts in the hospital’s family lounge. Two nurses from the PCICU staff, of which there may be none finer in the entire world, are recipients of the annual Hearts for Emma Nursing Scholarship, which subsidizes attendance to the pediatric critical care conference of the award winner’s choice. Both of the outstanding recipients – Anne Douglas and Kerry Schindler – not only cared with love and expertise for Marisa, but also attended her wake and funeral.
I had not seen Emma’s wonderful mother, Nancie, since I interviewed the family in November 2013 about Emma’s April 2011 heart transplant, but would be reunited with her inside the hospital’s family lounge during a chance meeting 17 days before Marisa passed.
Nancie and her friend, whose name escapes me but who I will always remember as a genuinely compassionate woman, sat with me inside the family lounge while I took a break from holding vigil at Marisa’s bedside to share with them an abridged oral account of my daughter’s story. Nancie reached into her bag to show me the actual print edition of the newspaper article I wrote about Emma, which she still carries around with her on trips to the hospital.
The family lounge provides a panoramic view of the New York City skyline with the Hudson River on the right, the Empire State Building straight ahead and the roof of Yankee Stadium to the left. Looking out those ninth-story windows on the corner of Broadway and 165th Street, the whole world seems endless and filled with infinite possibilities. Standing behind those windows, the whole world can appear infinitesimal and seem to close in on families of critically ill children. Having lived through Emma’s near-death experience and heart transplant, Nancie could certainly understand the wave of emotions Cyndi and I were feeling. Her presence in the PCICU on select Fridays through Hearts for Emma provides an invaluable resource to parents.
Tangible evidence of the wonderful work of organizations such as Hearts for Emma, which will provide a template for part of The Marisa Tufaro Foundation’s mission, are rarely publicized because nonprofits often toil in anonymity while helping families whose children’s privacy they must respect.
I have in my possession a purple blanket, however, as proof that nonprofits such as Hearts for Emma, and soon The Marisa Tufaro Foundation, can make a difference in the lives of critically ill children and their families.