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MUSC's ‘miracle patient’ back in the race by Heather Murphy Public Relations Thomas Murray, 5, whipped his head around as a TV commercial announced Nurses’ Week and National Hospital Appreciation Week.  Thomas Murray, center, breaks away from his parents (in Bridge Run T-shirts) and the crowd during the 2003 Cooper River Kids Run. “Mommy, is Jennifer going to get a present for Nurses’ Day? Can I take her one? When can we go see her?” Pam Murray, Thomas’ mom, smiles at the memory. “He’s a different child now, and we’re a different family. He asks me all the time if we can visit his doctors and his favorite nurse, Jennifer Larkins, at the Children’s Hospital.” A “miracle patient” of the Children’s Miracle Network (CMN), Thomas will participate alongside other miracle patients in the annual CMN telethon broadcast from the Harper Student Center 11 a.m. to 4 p.m. May 31 and 9 a.m. to 2 p.m. June 1. Thomas smiles with his favorite nurse, Jennifer Larkins, while in the PICU. This is MUSC Children’s Hospital Fund’s 20th broadcast and the 21st for CMN. CMN is a non-profit organization dedicated to raising funds and awareness for the 170 children’s hospitals in the U.S. and Canada. This year’s WCSC-TV 5 broadcast includes miracle patients and local on-air celebrities Warren Peper and Debi Chard. Visitors are encouraged and welcome to join the event. Thomas’ father, Michael Murray, described his son as “beautifully healthy” until last December.  “I went to Richmond (Va.) on business and Pam called one morning to say that Thomas couldn’t get out of bed,” he said. “She told me that his legs just weren’t working.” Pam took Thomas to see his pediatrician while Michael made the six-hour drive home. The physicians worked through a number of possibilities trying to diagnose Thomas via a blood test and CAT scans, but were still having difficulty. The Murrays were sent to a neurologist at another local hospital. The neurologist told the Murrays to go home, get some rest and to see their pediatrician the next day. Later that evening, Michael, spurred by his son’s now labored breathing and increased pain response, called friends and acquaintances in the medical field looking for answers.  “I was on call for the Department of Neurology. I was speaking to a friend of mine over the phone and he told me that Mike Murray’s son couldn’t walk,” said Gabriel Pitman, MUSC neurology chief resident. “I was also told that his symptoms might be that of Guillan Barre syndrome. I got Mike’s number, we were acquaintances, and gave him a call.” Michael would tell Pitman that his son’s condition seemed to be worsening and Thomas was complaining of pain in his legs as well as loss of intact sensation. Pitman believed that this type of paralysis paired with Thomas’ sensory changes sounded exactly like Guillan Barre, although very rare in young children. Pitman convinced the Murrays not to wait out the night and called for a bed in the Children’s Hospital. “Thomas wasn’t breathing well, he was in pain and in all around bad shape,” Michael said. “We arrived at the hospital by 10:30 p.m. and went directly to a room where a team of professionals were waiting to examine Thomas. Within hours, based on a thorough team approach and testing, Thomas was diagnosed with Guillan Barre.” “Guillan Barre presents as an ascending paralysis,” Pitman said. “Two of the emergencies that can occur with it are respiratory compromise and failure and cardiac arrythmias. After evaluation by myself and the pediatric team, we moved Thomas to the Pediatric ICU and instituted IV immunoglobulin.” Within the next 72 hours, Thomas lost all movement in his legs and arms as a ventilator breathed for him and intravenous feeding tubes provided his nutrition. “It started in his legs and just kept moving up, even with the first treatments,” Michael said. But the team—Pitman, Fred Tecklenberg, M.D., Pediatric ICU director; Ron Turner, M.D., Pediatric Neurology; and David Habib, M.D., Pediatric ICU—continued with its proactive approach. “There was no guesswork. They were going to try whatever it would take to do the best by our child,” Michael said. Thomas grew weaker as the disease continued its ascent. His severe case warranted Tecklenberg and his team to order another round of immunoglobulin. “Tecklenberg and his team did not take the approach of ‘we’ve done the prescribed treatment, let’s see what happens.’ When the next round didn’t work, they ordered a round of steroid treatments,” Michael said. “Thomas received that kind of wonderful care at all times.” The paralysis stopped at Thomas’ neck. The Murrays are quick to point out the many ways the PICU staff and Thomas’ physicians made them feel. They were granted a request to move Thomas to an isolation room in order to better his quality of life (he wasn’t sleeping with the PICU background noise).  Pam was flabbergasted by the amount of extra time put into her son’s case. “Dr. Tecklenberg would leave the hospital around 8 p.m., go home and research Gullian Barre for us,” she said. “Then he’d be back here at 7 a.m. Dr. Turner gave us literature and went over it with us instead of rushing to a Christmas party he was late for. Drs. Tecklenberg and Habib spent hours going over all the what-ifs with me.” Pam’s heartstrings felt a tremendous tug when Tecklenberg, along with Child Life coordinator Stephanie Mishoe, sat down with Thomas’ sister, Marianna, 3, to explain what was happening to her brother.  He showed Marianna a demonstration doll with tubes and IVs to show her what she would see on Thomas. “To take the time to do that when he had so many other patients was no less than amazing to me,” Pam said. Marianna, along with other patients’ siblings, was welcome in the Children’s Hospital Atrium, strictly a fun place for patients and their siblings to escape hospital life.  Thomas was so excited during Santa's visit, he moved his right hand for the first time since his paralysis from Guillan Barre began. When Santa arrived in Thomas’ room on Christmas Eve, Thomas moved his right hand. This first movement in a long time, gave the Murrays a ray of hope that Thomas was on the mend. After a long plateau, Thomas returned the grip of his father’s hand.  “I was amazed at the perseverance and dedication that Pam and Mike showed to Thomas,” Pitman said. “Mike slept in one of the reclining chairs in the waiting room every night of Thomas’ hospitalization. I’ll never forget that Christmas Eve. It was truly an answer to our prayers and a testament to the excellent care he was given by the Pediatric ICU staff.” Thomas was taken off the respirator before the New Year. Upon the conclusion of his treatment at the MUSC Children’s Hospital, Thomas and Pam traveled to Atlanta and The Rehabilitation Center of the Children’s Hospital at Scottish Rite where he would re-learn his motor skills.  Michael and Marianna visited every weekend.  “I would say to anyone with a child that I understand how you don’t appreciate a facility like the MUSC Children’s Hospital until you have to go there,” Michael said. “A sick child in this area should always go to the Children’s Hospital. They take care of children and that’s all they do. No other institution in the Southeast has a pool of talented physicians, nurses, and residents as deep as the one at MUSC. I can’t understand why anyone would send their child anywhere else.” “Something else that really touched us while at MUSC was the way the staff cared for all different patients from all different walks of life,” Pam said. “They do their best to create good quality of life for the children in the hospital while they are in their care, whether they have it at home or not. That’s a real tribute to the kind of people that work in the Children’s Hospital.” After an amazing 10-week recovery, Thomas remains healthy today as a rising first grader at James B. Edwards Elementary School. His parents credit the MUSC Children’s Hospital staff, Scottish Rite, unwavering faith, and support from their friends and community for his miraculous recovery. “Thomas’ friends and family threw a homecoming party for him and invited me and my family,” Pitman said. “Thomas made an unsteady dash for the two-story bouncy slide in the front yard and climbed the stairs without any real help. Everyone was clapping and yelling. There wasn’t a dry eye in the house. I’ll always be able to tell patients and their families never to give up hope because miracles really do happen.” “All I can say is that God and good medicine were looking out for our family,” Michael said. Make a pledge to CMN on May 31, June 1 Let your fingers do the walking and call 792-8000 or 1-888-245-1079 to make a pledge to the Children's Miracle Network Celebration Broadcast during its annual broadcast May 31 and June 1.  Beginning at 11 a.m. May 31, the local CMN broadcast will air on WCSC-TV 5. Broadcast from the MUSC Harper Student Center at 45 Courtenay Drive, the event will continue until 4 p.m. The event will also be held from 9 a.m. to 2 p.m. June 1. Visitors are welcome. All funds generated through the local broadcast stay with MUSC Children's Hospital. Since 1992, the broadcast has raised more than $5.9 million to help seriously ill children at MUSC Children's Hospital.  During the broadcast, viewers will meet some of MUSC's special champions—children who have beaten the odds to become winners against illnesses such as cancer, cystic fibrosis, sickle cell, heart and lung diseases, birth defects and severe trauma from accidents.  The broadcast will feature on-air celebrities and local stories of courageous young patients, their families and the physicians who treat them.  Catalyst Online is published weekly, updated as needed and improved from time to time by the MUSC Office of Public Relations for the faculty, employees and students of the Medical University of South Carolina. Catalyst Online editor, Kim Draughn, can be reached at 792-4107 or by email, catalyst@musc.edu. Editorial copy can be submitted to Catalyst Online and to The Catalyst in print by fax, 792-6723, or by email to petersnd@musc.edu or catalyst@musc.edu. To place an ad in The Catalyst hardcopy, call Community Press at 849-1778.