Gabby’s Journey Through Pain, Persistence, and Pancreatitis

Getting the Diagnosis

My daughter Gabby was just 7 years old when she was first diagnosed with pancreatitis. For weeks, she endured worsening symptoms, including severe abdominal pain, nausea, vomiting, and oily stools. Before receiving the correct diagnosis, she was misdiagnosed with irritable bowel syndrome (IBS), delaying the appropriate care and treatment of her pancreatitis.

At first, doctors did not recognize that Gabby had pancreatitis. Although her lipase was mildly elevated, the emergency evaluation focused on ruling out appendicitis. When the ultrasound was negative, she was discharged with a diagnosis of general abdominal pain.

Over the following weeks, her pain became more frequent, lasted longer, and grew more severe. Repeat outpatient lab work confirmed pancreatitis with elevated inflammatory markers, leading to her first hospitalization. At the time, doctors believed it was likely a one-time event caused by an infection or unexplained illness.

Looking back, her symptoms had been present much earlier. As a baby, Gabby was very fussy and experienced intermittent vomiting that we were told was GERD. By age one, her stools were consistently loose and oily. As she grew older, she frequently complained of abdominal pain. We have videos of her between the ages of 2 and 6 telling us her belly hurt and pointing to the pain. She was also consistently underweight. Her providers now believe she had likely been symptomatic since birth and had been suffering silently for years. When we finally received a diagnosis of chronic pancreatitis, we were relieved to have an answer—but also left wondering: why had our sweet girl been suffering for so long?

For months after her diagnosis, Gabby continued to experience persistent abdominal pain, and repeated lab work showed elevated lipase levels, confirming ongoing pancreatitis. She underwent extensive testing, including an EGD, sigmoidoscopy, and genetic testing, which identified an incredibly rare mutation in her CPA1 gene. Over the years, her pain became more severe, resulting in more hospitalizations than I can count. As both her mother and a registered nurse, it was incredibly frustrating to have local emergency providers dismiss Gabby’s pain despite her symptoms, lab results, and my advocacy on her behalf.

Understanding and Adapting

We spent countless hours learning everything we could about chronic pancreatitis and Gabby’s rare CPA1 gene mutation. We wanted to understand the long-term effects, potential complications, and available treatment options so we could make the best decisions for her care.

We explained it in the simplest, most kid-friendly way we could—that her pancreas was born working differently from other people’s. We told her it sometimes became “angry” and didn’t work the way it should, which is why she needed pancreatic enzymes to help her digest food and absorb nutrients.

During flares, it was difficult to explain why she needed to rest instead of playing with other children or why certain foods were off-limits. We avoided high-fat and fried foods whenever possible. Some of her friends understood, while others did not. We constantly reminded her that none of this was her fault—that she was simply made differently, and that her unique journey would one day allow her to do great things.

Gabby tried to live as normally as possible. There were times she could not do basic kid things like running, playing with friends, or attending school due to the pain. As she got older and the pain became worse, she was missing weeks of school. So much school was missed, we had to add medicine into her 504 plan. It was difficult since she was in so much pain – she cried all the time.

Choosing TPIAT

Our original GI provider felt that Gabby needed a specialist, so he sent us to Dr. Amit Grover at Boston Children’s Hospital – we are incredibly grateful for his care. He did everything he could as little invasive to see if it would relieve Gabby’s pain. Unfortunately, nothing worked. Her main pancreatic duct was too small to be seen and there was absolutely no movement of fluid in the duct to release enzymes. Her pain was so bad that at this point, she was utilizing morphine every 4 hours without relief. In three months, she had four hospitalizations and lost 7lbs within one month.

Dr. Grover explained that our only option was Total Pancreatectomy with Islet Auto Transplantation (TPIAT), a highly complex, extensive surgical procedure. There is no guarantee that the surgery will eliminate the pain as you swap unmanaged pain for diabetes. For Gabby that entailed a 15 hour surgery that included removal of her pancreas, gallbladder, spleen, and appendix. Her islet cells were taken from the pancreas and transplanted to the liver in hopes that the liver will continue producing insulin and reduce or eliminate the need for lifelong insulin therapy. We researched the facilities offering this procedure – looked at the doctors, their records, the long-term complications, and had to consider the demands this placed on our family. We ultimately chose to have the TPIAT with Dr. Jaimie Nathan and Dr. Jay Freeman’s team at Nationwide Children’s Hospital in Columbus, Ohio.

Advocacy and a New Beginning

Today, two and a half months after surgery, Gabby is thriving. She is off pain medication and managing her diabetes independently. Even early in her recovery, she was flushing medications through her feeding tube and confidently helping the nurse remove it herself. By about two weeks post op, she was pain-free and no longer needed Tylenol. Somewhere during recovery, a light went off inside her – she is brighter and more active. She is different, strong, and proud. She shows off her scar to anyone willing to see it, whether we know them or not. She is just so happy, bright, and full of life. It is like a light was missing all these years and has now lit her up so bright and shiny. Gabby also loves to share her story with anyone willing to listen. She is proud of her journey, and she tries to help others as much as possible.

My advice to caregivers would be to not be afraid to advocate – you know your child best. I was once told by local providers, “She’s watching the phone and walking to the bathroom, so she isn’t in that much pain.” But she was a child. Even adults in severe pain may still do small everyday things—that does not minimize what they are experiencing. Her pain was often dismissed as part of a “chronic condition” that others did not know how to manage. As a mom, I was desperate to fix her pain that cannot be managed at home – the type of pain that had her screaming, not eating, not being a kid. I wanted to give her some comfort so she could be home and be a kid. Advocating for your child can be intimidating, but no one will fight harder for them than you—and it is always worth it.

Finding a Sense of Belonging

We first discovered The National Pancreas Foundation while searching for information about pancreatitis. Since then, it has become a personal mission for our family to volunteer and be an active part of the pancreas community.

The NPF has helped us connect with other families and build a village of people who truly understand what we’re going through. We have met so many incredible families along the way. Through the NPF, we were especially grateful to connect with another family whose brave daughter—close to Gabby’s age—had also undergone a TPIAT. Her friendship and encouragement helped Gabby navigate one of the biggest moments of her life. We feel incredibly blessed to have found a community that offers understanding, support, and hope during even the most difficult times.