Local boy gives back after getting new lease on life
Wednesday, 26 September 2012 11:45

Inseparable since he got out of the hospital, Sam  (right) and his twin brother Ben participated in the Donate Life Family Fun Run in 2011 and 2012.

Sam Tiemann recovers after two transplants

by Nicole Rodman

    Dundalk residents Larry and Shelley Tiemann had just welcomed twin baby boys the month earlier when flooding from Hurricane Isabel destroyed their home in September 2003.
    Devastated, the couple received more bad news soon after, when they learned that one of their sons, Sam, had been diagnosed with a liver disease known as biliary atresia.
    In patients with biliary atresia, the bile ducts that drain bile from the liver to the intestines are blocked,  leaving the liver unable to function properly.
    While there are temporary treatment measures, most patients with the disease usually end up needing a liver transplant.
    Absorbing the terrifying diagnosis, the Tiemanns did some research before deciding on the Pediatric Liver Center at the Children’s Center at Johns Hopkins in Baltimore.
    The only pediatric liver transplant center in Maryland, the Pediatric Liver Center at Hopkins is the fifth largest center in the United States for living donor transplants, offering transplant for newborns through adolescents.
    Diagnosed with biliary atresia as a newborn, Sam was just 14-weeks-old when he underwent the first of many operations — known as a Kasai procedure.
    In the Kasai procedure, the non-functioning bile duct is replaced with a piece of intestine. While this is not a permanent fix, it usually postpones the need for a liver transplant  for a few years.
    For Sam, the Kasai procedure was effective for about six years. By the end of 2009, however, Sam was sick again, and getting sicker.
    By then, with Sam in and out of the hospital constantly, the Tiemann family was threatening to come apart at the seams as Larry and Shelley rarely saw each other and Sam’s twin, Ben, missed his brother.
    “It was the roller-coaster from hell,” Shelley noted in a video on the Johns Hopkins website.
    As Shelley pointed out during a phone interview last week, Sam spent two winters in the hospital, even spending Christmas 2010 in a coma.
    During the blizzards of 2010, Sam was forced to watch from his hospital bed as snow fell thicker than he had ever seen.
    Like any little boy, Sam yearned to play in the snow but he was too sick to leave the hospital.
    In order to raise the little boy’s spirits, the nursing staff at the Pediatric Liver Center at Hopkins went outside and gathered a mound of snow.
    Wheeling the pile into his room, the nurses gave Sam the chance to feel like a normal kid, even if just for a few minutes.
    From there, Shelley noted in a video for Hopkins, Sam underwent a change, becoming happier despite his illness.
    “He has definitely had a big turnaround since then,” Shelley explained.
    Despite their difficulties, throughout that winter, the Tiemann’s pressed on, asking all of their friends and family to test their blood types as potential liver donors for Sam.
    Finally, Sam’s aunt, Cindy Bode, tested as a match for Sam. In January 2010, she donated part of her liver to Sam.
    Unfortunately, Sam’s body never accepted the liver and, by that December, Sam was once again close to death.
    As Sam’s liver and kidneys began to shut down, he was placed back on the transplant list to await a donor liver.
    Just days later, on Dec. 22, the same day Sam was added back to the transplant list, a London-born woman named Leah was riding her scooter in Bermuda when she had a devastating accident.
    Despite being airlifted to Johns Hopkins for her injuries, Leah later died. Fortunately for Sam, however, Leah was an organ donor.
    While Leah’s family grieved her loss, they agreed to donate her organs, providing new life for an unknown number of patients across the country.
    For Sam, his second liver was eventually accepted by his body, though he will have to take anti-rejection medication for the rest of his life.
    For Shelley, the importance of organ, eye and tissue donation cannot be overstated.
    In support of the importance of this live-saving gift, Shelley, Sam and their family participate in the Living Legacy Foundation’s annual Donate Life Family Fun Run.
    Each September, the event raises funds for the Living Legacy Foundation, an organization dedicated to supporting and advancing organ donation.
    Sam first participated in the event last year, just months after his transplant.
    This year, Sam again participated in the event’s  non-competitive 1 kilometer walk, which took place on Sept. 22.
    For Shelley, the event is a great way to give back to a cause that has given her so much.
    As for Sam, today he is fully recovered and attending classes as a fourth-grader at Charlesmont Elementary School.
    When asked how Sam is doing today, Shelley laughed, noting (half-jokingly, perhaps) that “He is a brat.”
    Getting more serious, she explained that he is “playing like any 9-year-old should,” adding “To see him today you would never know” what he went through to look at him today.
    While Sam now has a full lease on life, he and his family will continue to support the Living Legacy Foundation’s Family Fun Run.
    “We will do this forever,” Shelley said of the annual event.
    Shelley is also dedicated to spreading word of the importance of saving lives by signing up to become an organ donor.
    For more information on the organ and tissue donation process, visit the Living Legacy Foundation website at www.thellf.org/donation-process/index.html.
    To donate to Sam’s Family Fun Run event page, visit http://llf.kintera.org/faf/donorReg/donorPledge.asp?ievent=1005142&lis=1&kntae1005142=72E02B48628D472189767B80FF39E3DF&supId=327651508.
    To donate directly to the Living Legacy Foundation, send checks to The Living Legacy Foundation, Attn: Ann Bromery, 1730 Twin Springs Road, Suite 200, Baltimore, MD 21222 or visit www.thellf.org/help/contribute.html.