Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Gracie S. Mary's baby By Wendy W. Hames Associate Director for Publications East Tennessee Children's Hospital Knoxville, Tennessee They called her “Mary's baby.” Mary Copp is a nurse in the Pediatric Intensive Care Unit, and “her” baby was Gracie Schommer, an infant with a rare disorder who really needed Mary's care last October. Gracie arrived at Children's Hospital with her parents, Paul and Julie, in early October 2004, when she was six days old. She had been spitting up quite a bit during her feedings and had eaten very little for the previous few days; on the sixth day, her breathing became rapid. Advised by their pediatrician to take her to the hospital, the Schommers went to their local community hospital, which arranged for her transport to East Tennessee Children's Hospital in a neighboring county. In the Children's Emergency Department, Gracie was nonresponsive, and the pediatric emergency medicine specialists took immediate action. Among other problems, her body temperature was just 94.5, yet she was sweating. Gracie was admitted to the PICU in critical condition, where she spent the next two weeks, much of that time in Mary's care. According to the Schommers, Mary treated Gracie as her own daughter, going above and beyond her duties as a nurse. For a time Gracie's pupils were fixed, and it appeared her outcome would not be a happy one. Her body had an extreme build-up of ammonia that had to be removed; she was treated with hemofiltration, a blood filtering system that had never before been used in the hospital. After a day and a half of hemofiltration, she was much improved. She was finally discharged home after three weeks at the medical center. Ultimately, Gracie was diagnosed with citrullinemia, a disorder that prevents her body from properly metabolizing protein. Gracie is on six medications and a specialized diet because regular infant formulas contain more protein than she can handle. Her formula is a mix of three products, including one that must come from a pharmacy. She bottle-feeds but also requires tube feedings to receive adequate nourishment. Even when Gracie's situation looked the worst, the Schommers were encouraged by the critical care physicians, nurses, dietitians and social workers caring for their baby and the family. Joe Childs, M.D., Director of the PICU and Vice President of Medical Services at Children's Hospital, told the family at one point, “For all we know, someday Gracie could be at the top of her class.” Mom Julie Schommer said that statement and a positive attitude projected by Dr. Childs and the others was most comforting: “Even when Gracie was at her worst, they still looked at the positive side and did everything they could for her.” The only cure for Gracie's disorder is a liver transplant. Patients with citrullinemia can live a long time on medication, and sometimes a liver transplant is done only as a last resort. The Schommers hope Gracie can have the transplant sooner, while she is relatively healthy, so that there will be a greater chance of a successful outcome. East Tennessee Children's Hospital is a 122-bed regional referral center that offers 27 pediatric subspecialties and many specialized pediatric services, but transplantation is not among them. While East Tennessee Children's Hospital cannot provide the transplant services Gracie needs, the hospital is working with the Schommers to meet as many of their needs as possible and to coordinate services with Children's Hospital of Philadelphia (the hospital the Schommers have chosen for Gracie's transplant) as well as with Vanderbilt Children's Hospital in Nashville, where Gracie also has made some visits. Gracie receives services from our Home Health Care Department and our Rehabilitation Center. The Schommers know many more hospital visits are in Gracie's future, and they are thankful Children's Hospital is nearby. The Schommers are thankful their happy little girl, who is always smiling, will not remember her childhood struggles. They hope that she'll have no greater worries about her disorder than why she has to take medicines and why she has a big scar. Added: 10-29-04 Gracie is 4 weeks of age. Child's condition:Citrullinemia (urea cycle disorder) Comments: Please always pray for her, as there is no cure