The extraordinary love and care my beautiful daughter received from the Cardiac Intensive Care Unit staff at New York Presbyterian-Morgan Stanley Children’s Hospital captures the quintessence of the real-life heroes we celebrate during National Nurses Week.
I continue to marvel at the staff’s remarkable resiliency and strength. The nurses worked inordinate hours under extraordinary duress while unflappably caring for every critically ill patient on the floor as if he or she were their own.
After each emotionally draining and physically exhausting workday, the nurses returned home to their own loved ones, somehow mustering the energy to read a bedtime story to their child or eat breakfast with their spouse, depending on which grueling 12-hour-plus shift a nurse had completed.
The compassionate medical team, which became our second family, worked relentlessly around the clock for Marisa, whose strength was boundless and who approached life, despite all her health issues, with unjaded innocence and a positive outlook.
A heart transplant, which was supposed to extend Marisa’s life, tragically cut it short after a postoperative complication developed into a rare form of cancer to which she succumbed following a valiant battle.
Born with a complex cardiac defect, Marisa survived six open-heart surgeries and two life-threatening conditions prior to transplant. She died in 2017 at the age of 13, nearly seven months after receiving an organ donor’s ineffable gift.
Three months before Marisa contracted cancer, she underwent a painstakingly complex 19-hour heart transplant surgery. The nursing staff provided Marisa with critical postoperative care. She spent 71 days in the hospital before being discharged with the promise of a new life on which post-transplant lymphoproliferative disorder cruelly reneged.
Marisa’s room was overrun with medical equipment, making it difficult for nurses to maneuver in the cramped quarters around her hospital bed. The tension inside the room was palpable for the first two weeks after transplant as Marisa, with the help of ECMO and a ventilator, perilously clung to life, which a team of skilled nurses helped save.
Marisa spent 161 of her last 214 days as a patient at New York-Presbyterian Morgan Stanley Children’s Hospital, where dozens of doctors and nurses, profoundly impacted by her remarkable courage and indomitable spirit, were reduced to tears after chemotherapy and radiation treatments failed to thwart the relentless onslaught of an aggressive disease that riddled her brain and body.
As her condition precipitously declined during the 2016 holiday season, Marisa’s medical team went out of its way to ensure she was comfortable. Marisa was treated with the utmost dignity and respect. Nurses took remarkable steps to make her feel at home.
Upon learning our family’s Christmas Eve tradition was to take Marisa to Build-A-Bear, nurses brought that experience to her bedside with two huge bags of white stuffing, a cute brown bear, a hospital scrubs outfit, and a red heart to place inside the stuffed animal before it was stitched closed.
A week later, one of the nurses presented Marisa with a fleece blanket featuring characters from Disney’s Moana, the last movie Marisa ever saw in a theater and one whose soundtrack she played repeatedly toward the end of her too short life.
The last complete sentence Marisa ever uttered were words of gratitude to the nurse for that special blanket. “Thank you so much,” she said, essentially breathing each syllable in a barely audible staccato voice. “I ab-so-lute-ly love it.” The fleece was subsequently rotated with a beautiful sunflower blanket the mother of one of Marisa’s other nurses knitted.
In the ensuing days, a team of nurses and an intensive care unit doctor performed a well-choreographed ballet, transporting Marisa’s comatose body and all her cumbersome medical equipment to the bowels of the hospital, where she received whole-brain radiation in a last-ditch effort to save her life. The same dance was performed countless times in previous weeks as nurses escorted Marisa to the adjoining adult hospital for imaging.
After doctors exhausted all medical options, a nurse presented our family with a pillow she handcrafted. The white casing contained the names of the entire Pediatric Cardiac Intensive Care Unit staff and artwork of footprints with the words: “When you see only one set of footprints in the sand it was then that I carried you. God bless Marisa.”
Members of the medical team subsequently came to the bedside in small groups or as individuals to offer their condolences, affording my wife Cyndi and I an opportunity to reminisce, a cathartic experience that filled the room with laughter and tears.
A smaller contingent of veteran nurses presented us with a beautiful lavender dress in which Marisa was eventually laid to rest.
More than a dozen doctors and nurses attended Marisa’s wake, funeral, and repast. At the latter, I was honored to publicly recognize those nurses in attendance as heroes during a toast celebrating Marisa’s inspirational life. They received a well-deserved standing ovation.
In the days that followed, Cyndi and I found solace in poignant condolence letters we received from several of the nurses.
Weeks later, one of those nurses returned to Marisa’s grave site, leaving a flower arrangement.
A year after her untimely passing, three of Marisa’s nurses reunited with us in New York City when the trio arranged for a mass at St. Patrick’s Cathedral to be offered in Marisa’s memory on her birthday. We went out to brunch afterward with the nurses, who embody a spiritual connection to Marisa no one else can provide.
Nurses from the unit have supported us and the nonprofit bearing our beautiful daughter’s name, participating in fundraisers for The Marisa Tufaro Foundation, which has donated nearly $350,000 to fulfill its mission of assisting pediatric patients and other children in need.
Cyndi and I stayed at Marisa’s bedside for all her hospitalizations, which totaled more than two years. During months-long stays at New York-Presbyterian Morgan Stanley Children’s Hospital, the Pediatric Cardiac Intensive Care Unit nursing staff comforted us, made sure we ate, advocated for Marisa at every turn, showered her with gifts and love, provided her with outstanding technical expertise and care, and visited her when she was on the oncology floor.
We are forever indebted to each of those heroes, who should be celebrated not just one special week out of every year, but daily.