March 18, 2020

Her 8-year-old son died 20 years ago. She just got to hear his heart beat again.

Daily Briefing

    More than 20 years after receiving a pediatric heart transplant, Jon Hochstein, now age 25, met his donor's family—and gave the mother of his donor the chance to listen to her late son's heartbeat, Karen Weintraub reports for STAT News.

    Here are 5 key tactics to attract and retain transplant patients

    A donated heart

    When Hochstein was four years old, he was hospitalized with an enlarged, damaged heart that was unrepairable, Weintraub reports. He needed a donor.

    During Hochstein's hospitalization, eight-year old Christopher was hit and killed by a truck that drove through a crosswalk in front of his elementary school, Weintraub reports. Initially, Christopher's mother, Elisabeth Tilly, didn't want to donate his organs—but then, she noticed Hochstein.

    Ultimately, Tilly decided that Hochstein needed Christopher's heart, and she donated the organ.

    Hochstein's life after transplant

    Hochstein has nearly died twice since his transplant, Weintraub reports. When Hochstein was in second grade, he stopped gaining weight, started to get tired easily, and had fevers as high as 105 degrees. Hochstein eventually was diagnosed with Hodgkin's lymphoma, and his doctors discovered that the immunosuppressing drugs he was taking to avoid rejecting Christopher's heart had left him vulnerable to developing cancer.

    Hochstein underwent six months of chemotherapy, which helped control the cancer, Weintraub reports.

    Then, when Hochstein was in fifth grade, he struggled to run around the track at school—something that hadn't been a problem for Hochstein in the past. Hochstein's mother took him to the doctor for some tests, and they learned that his body was rejecting the transplanted heart.

    Hochstein received treatment to prevent the rejection, and Weintraub reports that Hochstein's been "remarkably healthy" since.

    Hochstein completed college and was accepted into Stanford Medical School, Johns Hopkins Medical School, and Harvard Medical School, and ultimately decided to attend Harvard.

    Hochstein's not exactly sure of his future career path but, as of now, he wants to be a pediatric transplant surgeon, Weintraub reports.

    Hochstein said he is worried that he might need another heart and a new kidney one day, but for now his heart is still working well.

    "Anything could happen to anyone. We're all on a balance beam. Mine's just a little more narrow," Hochstein said. "This heart could last me a normal life expectancy … This might go on forever, who knows. That's my attitude. Otherwise it would be very depressing."

    Hearing Christopher's heart beat

    The Hochsteins had always known that Jon's donated heart came from an eight-year-old boy who had been hit by a truck, and even kept a newspaper article about the accident, Weintraub reports.

    But until recently, they'd never been able to locate Christopher's family. Andrea McCarren—a former investigative reporter who was VP and chief content officer for the Pentagon Federal Credit Union, where Hochstein's dad, David, worked—volunteered to help.

    Eventually, McCarren discovered a GoFundMe page Hough had set up to get a headstone for Christopher's grave. McCarren contacted Christopher's family and arranged for them to meet the Hochsteins in January, at Christopher's sister's home in New York.

    Hochstein brought a stethoscope to the visit and let Tilly listen to her son's heart beating in his chest, Weintraub reports.

    April Hough, Christopher's sister, said meeting the Hochstein family changed her brother's story and gave her peace of mind, knowing her brother's heart had helped Hochstein.

    People who donate organs don't get to choose who receives the organ. "But I know that if we got to choose, we'd choose Jon over and over and over again," Hough said. "To think that Christopher got to be a part of such an incredible legacy is unbelievable still."

    The Hochsteins said they're just as thankful for Christopher's heart. "There is not a Christmas that doesn't go by when we are grateful that Jon is there, but realize that there's another family with a missing spot," Hochstein's mother said.

    Hochstein said he thinks of Tilly and Hough as part of his family. "There's this massive special connection," he said, noting, "She had to make this crazy decision amidst this tragedy in her life to let someone else use her son's heart and other organs. I was really grateful that she got to listen to Christopher's heart in my chest. That was really powerful" (Weintraub, STAT News, 3/13).

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