Crohn's Disease: Gabriella's Story

Gabriella was a healthy girl for her first four years of life. Then, in the summer before she turned 5, her parents, Lisa and Christian, started to notice red in her stool. At first, they thought it was something she ate. When it continued, they called their pediatrician. He didn’t think it was a serious concern. He predicted it would go away, and it initially did.

“Things only got worse”

Unfortunately, the problem came back that fall, and grew worse. On New Year’s Eve Gabriella’s stool was very bloody.

Lisa and Christian made an appointment with a GI specialist in Delaware. Tests showed that her hemoglobin counts were low. The specialist suspected inflammatory bowel disease (IBD), an immune disorder that causes inflammation in the tissue of the digestive system. IBD can cause the kind of bleeding that Gabriella was experiencing. The specialist scheduled a colonoscopy and endoscopy which confirmed the diagnosis.

Gabriella was put on steroids and low-level anti-inflammatory medications, plus iron supplements and antibiotics — a round-the-clock medication schedule that required her parents to wake her at night for doses. But she did not get better.

“Things only got worse that winter,” remembers Lisa. “We were scared. She had several blood transfusions and was hospitalized twice, each time for three or four weeks. Her face was puffy from the steroids. She had no energy. She wasn’t sleeping well. She was asking us why we were letting this happen to her. We were feeling helpless and defeated. Nothing was working. Gabriella has two younger siblings, and with admission after admission, we were exhausted.”

Lisa called Children’s Hospital of Philadelphia (CHOP) to get a second opinion. In April, they brought Gabriella in to meet with Judith R. Kelsen, MD, Director of the Very Early Onset Inflammatory Bowel Disease (VEO-IBD) Program at CHOP.

A new treatment approach at CHOP

“Dr. Kelsen told us she thought she could make her better,” says Lisa. “She had dealt with kids who were like Gabriella. She said she would treat it differently, with different medication. We decided to switch to CHOP that week.”

As the team worked on developing a treatment plan, they started with iron infusions to bring up the hemoglobin counts. At Gabriella’s first infusion appointment her hemoglobin level was down to 4, the lowest it had ever been. She was admitted directly and given a blood transfusion. When her condition was stable again, Dr. Kelsen performed another endoscopy and colonoscopy, which showed that Gabriella’s colon had grown worse.

Dr. Kelsen started to wean Gabriella off of the steroids, and put her on a medication that would directly attack the inflammation.

“A couple of days after she started on the new medications, she started to turn around.”

“Her hemoglobin stabilized. There was no red in her stool, and no belly pain. Her color was better,” says Lisa. Over the summer her steroid doses were gradually reduced until she was off them entirely. By the time she started kindergarten in the fall, she had lost most of the extra weight she had put on with the steroids. With her renewed energy, Gabriella loved school and started dance lessons again.

Going to school with Crohn’s disease

Lisa’s natural inclination was to overprotect Gabriella and shelter her from exposure to anything that might make her sick. “Dr. Kelsen told us not to do that,” she says. “She told us, ‘She’s still a kid. You need to let her go.’”

Letting her go to kindergarten was one of those scary steps. Lisa was reassured to find out that the school nurse was familiar with IBD. She had it herself, and had been treated at CHOP as a child. “That was huge relief for me,” Lisa says.

When Gabriella was 6, she started to have some blood in her stool again. Dr. Kelsen ordered another set of scopes. That led to a more specific diagnosis of Crohn's disease, the form of IBD in which inflammation is found beyond the colon. The new diagnosis didn’t change her treatment, but it gave the medical team more precise information to work with as they continued to adjust her medications to address the symptoms. Gabriella continues to receive periodic iron infusions and regular infusions of a biologic immune suppressant. She also follows an anti-inflammatory diet under the guidance of the medical team.

“She amazes me”

Now 10, Gabriella has a good sense of humor and is drawn to people who are funny. She loves camping and fishing. She does well in school, favoring art and math. She likes to read and to dance. She takes tap, jazz and ballet lessons and is on a competitive dance team. She is one of the top players on a travel soccer team. She loves swimming, and her summer swim team raises money for IBD research. “Her strength amazes me,” says Lisa. “I see her compete alongside kids who don’t have health problems and she holds her own. I admire her resilience in all of this.”

“We’re blessed to have CHOP so close to us,” adds Lisa. “Gabriella is getting the best care possible. We’re especially thankful for Dr. Kelsen. Gabriella’s story is different. She’s younger and sicker than most people with IBD. Dr. Kelsen is aware of all the new treatments.” Gabriella is playing a role herself in the research into improved treatments by participating in some of the studies Dr. Kelsen is leading.