There was a good reason why Emma Rothman chose to launch her book, “Things My Therapist Doesn’t Want Me to Say, Ten Years Post Heart Transplant,” at Temple Sholom’s Friday night service November 4 in Scotch Plains.
After Ms. Rothman, now 23, had an emergency heart transplant at Morgan Stanley Children’s Hospital in New York in April 2011, the synagogue’s members and its clergy, Rabbi Joel Abraham and Cantor Vicky Glikin, stood by her family.
“Our communities, especially Temple Sholom, became our extended family and picked my family up and carried us forward when we couldn’t ourselves,” she told congregants.
“The blanket you made me, the meals that were cooked for us, and all the prayers and positive energy sent our way, made a really terrifying and uncertain time in our lives, a breath easier.”
The timing of the paperback’s launch, similarly, was not random.
The month of November is designated for National Donor Sabbath events by the NJ Sharing Network, the federally designated nonprofit organization responsible for the recovery and placement of donated organs and tissue in the state.
National Donor Sabbath is an opportunity to educate faith-based communities about the critical need for organ and tissue donations from both live and deceased donors, and the role faith plays in making the decision to register as a donor.
According to United Network for Organ Sharing, more than 100,000 Americans –- nearly 4,000 of whom live in New Jersey -– are waiting for a lifesaving transplant, said Alyssa D’Addio, vice president of hospital and community services for the NJ Sharing Network.
“Most of the world’s major religions hold official positions that look positively upon organ and tissue donation as an unparalleled gift of generosity and compassion,” she said.
“We are extremely fortunate to have strong partners in our local faith-based communities who support our lifesaving mission by discussing organ and tissue donation with their congregations and by sharing their inspirational stories and unique perspectives about donation.”
Ms. Rothman said her original intention in writing her story was to give herself a fuller understanding of what she went through. “For most of my life, when I was asked about what happened, I was relying on my parents or doctors to help me tell the story,” she said. “I didn’t feel I had the tools or even the details to answer this question myself.”
As she was writing, she realized that she also wanted to create a sense of community for three types of readers: “People who have gotten organ, eye, or tissue donations; people who spent a lot of their childhood in the hospital and are coming to terms with how to move forward as adults and being comfortable with their identity and their health and what happened; and people taking care of a sick person.”
She also hopes cardiology residents will read her book to better understand how they can enhance their bedside interactions with patients –- especially young patients.
The book seems to have struck a chord; the electronic version reached the top of the “Medical Specialties New Release” list on Amazon just a day after its release in September.
In her book talks, Ms. Rothman dispels common organ and tissue donation myths “because as a community, one of the most powerful things we can do is disseminate what we learn and share it with others.”
One of the biggest misconceptions she addresses is the notion that registered organ donors do not receive the same quality of medical care when suffering a life-threatening incident, presumably because the staff is eager to transplant the patient’s organs or tissues.
It is “so important to understand” that this isn’t true, she said. “During a medical emergency, no matter when, what kind, or who the person is, first responders and clinical professionals are not concerned with your organ donation registration status.
“Their job is to do everything they can to sustain life, and only after the patient is declared brain dead or suitable to undergo tissue and organ recovery do organ and tissue donation conversations enter the room.
“Literally and physically, the medical team whose job it is to keep you alive is different than the team that talks to loved ones about the patient’s wishes, and different from the clinical team that is in charge of the organ and tissue recovery procedure.”
She also challenges the myth that registering as a donor is a hassle.
“There is no age limit and registering online has never been easier; you can even do it on your iPhone’s health app,” she said. Another option is registering at any motor vehicle agency.
“This information is so vital that I even published it on the back cover of my book,” she said.
Ms. Rothman acknowledged that many people have difficulty discussing the subject of donating body parts.
“You’ll find a glossary in the back of my book because I want to make these conversations as accessible as possible so everyone in the community can participate,” she said.
“Sometimes these conversations can be hard, awkward, and even uncomfortable because talking about organ and tissue donation is acknowledging that the only difference between you and a sick person or you and a chronically ill person, like myself, is time.”
She said that she hopes her book allows readers to “think about these topics from a different perspective, from a really sick and scared kid’s perspective. Sharing these messages fills me with so much gratitude that people are willing to listen and join my community.”
Organs that can be transplanted are the heart, kidney, liver, pancreas, lungs, and intestines. Tissues that can be transplanted include corneas, skin, muscles, bones, veins, and heart valves. In fact, one tissue donor can restore the health of about 75 people.
Living people can donate a kidney or a portion of their liver — or rarely, both, as Teaneck’s Rabbi Ephraim Simon did in 2009 and 2019 — as well as skin, bone marrow, and blood-forming cells.
According to the NJ Sharing Network, “organ and tissue donor registrations in the Garden State continue to increase thanks to strong community education and outreach efforts and expanded ways to register. New Jersey donor registration jumped 8.3 percent in 2021, ranking New Jersey No. 4 in percentage of state population on the National Donate Life Registry.”
Last year, the network reports, “233 individuals in New Jersey gave the gift of life, an all-time high for a single year. In addition, 42,112 eye and tissue donations enhanced the quality of life for those in need.”
Soon after Ms. Rothman’s transplant, her family established Hearts for Emma through the NJ Sharing Network to support local education and advocacy efforts.
In August, the Hearts for Emma Partner Fund of the NJ Sharing Network Foundation awarded a scholarship to Sam Prince of North Caldwell, a 2022 graduate of West Essex High School who received a heart transplant when he was 8 years old.
Now a Rowan University freshman, Mr. Prince has long been an active volunteer with the NJ Sharing Network. His fundraisers over the years have raised more than $100,000 for the NJ Sharing Network Foundation. He recently was honored at MetLife Stadium during a Giants game and encouraged the crowd of 80,000 people to register as organ and tissue donors.
Ms. Rothman grew up in Cranford, where her parents, Nancie and Mark, still live. After graduating from Syracuse University in 2021, she moved to the Chicago area but is frequently back in New Jersey to visit her family and get regular medical checkups in Manhattan. She hopes to have a career in patient advocacy.
“Right now, I am focused on giving book talks,” she said. “If any bookstore or synagogue is interested, please contact me through my website, emmarothman.com.”