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Follow Us On Instagram to See Who’s Making Community “Connections”! @Connectionmag T he “Heart Museum” By: Ellyn Mantell Many years ago, a friend and I began to knit blankets for the SHARING NETWORK in New Providence, a location that facilitated the sharing of organs from donors. The walls are lined with names of those caring enough, or whose families were giving enough, to provide life-saving organs for others...at a time when the life of their loved one had just ebbed. I learned these blankets were a lasting memory to the families of these loved ones, as the deceased were wrapped in them before their organs were har- vested. The blankets then went home with the families, a connection to one gone, a place to leave tears. I knew none of that when I entered the building perhaps a decade ago, and never had I thought of such a moment...not as I signed my organ donor card space on my license each renewal, nor when I thought of how my body could save lives. It was a somewhat amorphous commitment to a stranger to me and my family. These several years later, I am overwhelmed with joy to tell you of Zack, a hero amongst children, a young “man” of only six years, a warrior like no other I have met, and a very new recipient of a heart! What a journey he and his family have traveled to be at this point in time, and at least from a distance, I have watched it unfold. My facts may be hazy, my storytelling a little “created” (I have been known to be creative!) but my feelings will be as genuine as I can possibly express. We have watched this little lion fight to survive, and it has been valiantly! Our very own “tin man” traveling on the yel- low brick road to receive this heart, Zack and his family endured more than is able to be expressed on paper. Even the great Wizard of Oz would have crumbled at far less of a challenge! Three years ago, when Zack was only three years old, a routine well-visit at his pedia- trician revealed a sound like a murmur. Not uncommon, these murmurs, but enough of a red flag went up in the doctor’s mind to have him checked by a cardiologist. Our family caught the first signal of something serious at that point, because Zack’s mom, Jess, is one of my daughter’s closest friends. I still remember Emily’s call to me, worried about the tests to follow, herself the mother of our three year-old grandson. When the diagnosis revealed itself, it was one of those very rare situations...and very, very dead- ly. Zack would eventually need a new heart, and in all probability, it would be sooner, rather than later! Jess and Marc’s challenge was to keep Zack healthy enough to receive the heart when it was “time” while preserving a childhood and educating him to be prepared for the moment when his life would change forever. As Zack became more and more infirmed, he was placed on 1A status, which meant moving from Maryland to Pittsburgh to wait, and wait...and wait for his new heart...one that would match his size and tissue type. There were so many times that if a heart was appro- priate, Zack wasn’t even healthy enough to endure the procedure. Zack waited a total of 623 days, 170 of which were status 1A, which the doctors indicated was a long time for 1A. And then the call came, and a heart was available. The “miracle” had hap- pened, and yet... Jess and Marc are not people who took their joy without feeling the heartbreak of the donor family. Nor are those of us who love them! We all felt their bittersweet emo- tions: the feeling of hope and relief that Zack was well at a time that a heart was being offered to him, as this little donor was to be laid to rest. Perhaps he or she was wrapped in a blanket of love from the Sharing Network...I have no idea, but I do know the circle had closed for me. I share this story with you because this family, including their darling Ben (can you only imagine how far up he looks at his big brother?) are amazing! Their support family is amazing! Their friends, including my daughter, are amazing! Everyone has come together to stand with Jess and Marc, as Zack begins his new life. There is a sense of devotion I have not seen before. And I will forever remember the strength of Jess, as she battled her own illness. This is a remarkable story, and one I am so happy to tell you. And what of the “heart museum?” In the near future, Zack will leave Pittsburgh to return to his home in Maryland. He will close the Waiting for the Transplant chapter of his life’s book. But he will need closure, and he will need to say goodbye to his sick heart, which he will do at the “heart museum,” a room used to educate medical stu- dents. And then he and his family will write letters of their immense gratitude to the family of the young donor who gave Zack the gift of life. And then our young hero, the tin man with the new heart, will begin the next exciting chapter of his life’s book. He deserves nothing less...Shop Downtown Somerville
