Alison gets back in the swim of things
The summer before Eighth grade should be a joyful time for a 13-year-old girl, filled with days spent at the pool and trips to the mall with friends. For Alison Schiffner, last summer marked the beginning of a four-month stay at Children’s Memorial Hospital, where she bravely battled complications from Crohn’s disease that sometimes required surgical procedures every other day.
Each year 200 children and adolescents with Crohn’s disease and ulcerative colitis are treated by Children’s Memorial’s Division of Gastroenterology, Hepatology and Nutrition. The program was recently ranked in the top 10 in U.S. News & World Report’s survey of top children’s hospitals in the U.S.
Crohn’s disease is a chronic inflammatory bowel condition that primarily affects adults, and may recur at various times over a lifetime. While there is no cure for the disease, it can be managed with medication, including medications that suppress the immune system. For some, like Alison, who experience complications, surgery is necessary.
Throughout the summer of 2009, Alison had been losing weight and experiencing periodic stomach and gastrointestinal distress. According to her mom, Carolyn, her normally outgoing daughter had no energy or desire to participate in her normal activities. After several particularly painful episodes prompted emergency visits to a local hospital, tests confirmed Alison had the disease, and she was admitted to the facility. There she was treated with steroids, and after she began to feel better was discharged in time to leave for a family visit to Florida with her mom, father Scott, and brothers Brad and Matt.
Just before returning home, Alison experienced severe pain that required a trip to the emergency room in St. Petersburg, where doctors discovered her intestine had perforated. She underwent surgery to create a temporary colostomy, which was complicated by subsequent abscesses, infection and, ultimately, a re-opening of the incision, as the wound was slow to heal. A fun family reunion with grandparents, aunts and cousins soon turned into a month-long hospital stay.
Even before returning to Chicago, Alison’s parents consulted with Jennifer Strople, MD, director of Children’s Memorial’s inflammatory bowel disease program; and Marleta Reynolds, MD, Children’s Memorial’s surgeon-in-chief and head of the Division of Pediatric Surgery. Once she was well enough to return home, Alison was seen by Dr. Strople and Dr. Reynolds, who were concerned about the opening in her abdomen. Within days she was admitted to the hospital, where she would spend the better part of four months battling fevers and recurrent infections, undergoing two major surgeries and frequent other surgical procedures.
Alison, who had lost 25 pounds over the summer, spent her first month at Children’s Memorial in what her mom refers to as a “feverish delirium,’ battling fevers that reached as high as 105 degrees. Right from the start, though, Carolyn says she had confidence in the care her daughter received from her multidisciplinary team of caregivers. In particular, she was impressed with Dr. Reynolds, who would ultimately perform numerous procedures on Alison.
“I felt a sense of relief and hope when I met her,” she says. “Dr. Reynolds took the reins and said, ‘Here’s what we need to do.’ She was always there for us, and she acted as if Ali was her only patient.”
Carolyn spent virtually every night in Alison’s room. Her dad and brothers were frequent visitors and helped decorate her room to match the various holidays as the months went slowly by: Halloween, Thanksgiving, Christmas. Carolyn describes her daughter as “confident and optimistic,” but admits that Alison’s slow recuperation and frequent setbacks affected her.
“There were times when she was discouraged and would say, 'Mom, I don’t think I’m ever going to get out of the hospital,’” she says. “That just tore my heart out, but the encouragement she got from her caregivers was so important in helping her overcome those feelings.”
When she was restricted to bed, Family Services staff would visit frequently to bring crafts, and her nurses took extra steps to help — even bringing her movies from home. “This kind of special care was what helped her remain positive and keep her sense of humor,” says Carolyn.
That was evident on Halloween, when Alison asked her mom to paint eyes on the outside of her eyelids to fool her caregivers, so that when they put her to sleep for one of her frequent operating room procedures it would appear as if she were still awake.
When Alison was able to walk, sometimes she and Carolyn would visit the mockup of a patient room at Ann & Robert H. Lurie Children’s Hospital of Chicago, Children’s Memorial’s new facility. When the hospital opens in 2012 in downtown Chicago, it will include 288 all-private inpatient rooms and enhanced amenities for families staying overnight.
“The new rooms look wonderful — comfortable and with real beds for visitors,” says Carolyn. “They look more like hotel rooms than sterile hospital rooms, and little things like that contribute to healing.”
Following another major surgery just before Christmas to repair the source of the recurring infections, Alison made rapid progress and was even able to eat noodles and Jell-O — her first solid foods in several months. Finally, in early January, she was discharged from Children’s Memorial.
“So many people from the hospital staff came to see Alison before she left,” says Carolyn. “In fact, two of her nurses came in on their day off just to say goodbye to her, and all of her nurses chipped in to get her a special gift basket. It was wonderful to be supported in that way by the staff, which had become an extended part of our family.”
Now 14, and looking forward to entering high school in the fall, Alison is enjoying summer in a way that was impossible just a year ago: swimming, riding her bike and hanging out with friends. Still, she will need to continue to deal with the ups and downs of a chronic disease for the rest of her life, and faces major surgery in August to close the colostomy.
“We’re completely confident in the care we receive at Children’s,” says Carolyn. “There’s no comparison to other hospitals we’ve been to. The staff treats the whole child, ensuring that they are not only physically better, but that they are cared for emotionally as well. Children’s really is a special place.”
Story originally appeared in the July 2010 issue of Heroes Update.
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