COTA for Shantel Strong

Our Story

Shantel is a sophomore in High School and hopes to become a nurse one day. She has a wonderful sense of humor, and loves music, playing the violin, sketching, and hanging out with her friends.  Shantel began experiencing frequent stomach pain, nausea, and occasional vomiting while in elementary school.  As she got older this progressed.  We had doctors diagnose all kinds of conditions.  Flu, constipation, gas, indigestion, stress, IBS, and even pulled muscles.

In February of 2023, Shantel was woken with agonizing pain and vomiting.  We rushed her to the emergency room in the middle of the night during the worst snowstorm of the year.  Shantel’s bile duct was blocked.  She was admitted and scheduled for surgery.  Her gallbladder was removed, and an ERCP was performed to clear the bile duct.  During the ERCP the gastroenterologist noticed that her pancreas had damage consistent with moderate to severe chronic pancreatitis.

Not really understanding what a pancreas’s purpose was, we learned that the pancreas produces enzymes to break down fats and creates insulin to control blood sugar.  Pancreatitis is not common in children.  It is estimated that about 2 out of every 100,000 children are diagnosed with chronic pancreatitis per year.  Shantel’s pancreatitis is chronic which means the damage is irreversible. Our only option was to treat the symptoms. We were hopeful that most of her symptoms were due to gallstones and that things might quiet down now.  Unfortunately, her symptoms have rapidly become worse.  Over the last year, Shantel has been hospitalized 6 times, had numerous emergency room visits, underwent 5 surgical procedures, and can no longer attend school due to the constant pain she feels. 

Genetic testing revealed that Shantel has 4 different genetic mutations that affect her pancreas.  Long story short, the pancreas enzymes activate before leaving the pancreas, causing the enzymes to break down the pancreas tissue rather than fat in the intestines.  She currently takes oral enzymes with every meal.  This helps with her digestion.  It does not stop the debilitating pain caused by the naturally produced enzymes that are damaging the pancreas.  We recently traveled to Ohio for an evaluation to see if Shantel would be eligible for TPIAT (Total Pancreatectomy with Islet Auto Transplantation).  We met with 8 specialists over a five-day period.  They unanimously agreed that the TPIAT procedure is Shantel’s best option.

The TPIAT procedure is not common and is only performed at three hospitals in the United States for pediatric patients.  It involves a 12+ hour surgery where they will remove her appendix, pancreas, duodenum, and spleen.  The pancreas then gets sent to a lab and the insulin-producing islets are extracted while the surgeon reconstructs the gastrointestinal tract.  The islet cells are then injected into the liver.  Shantel will become a Type 4c diabetic, 100% dependent on insulin after surgery.  It is hoped that within the first year, the islet cells will start producing insulin from the liver and decrease Shantel’s insulin needs.

Shantel is ready to take her life back.  To do that, she will need to travel to Ohio and spend 3-4 weeks in the hospital and then remain in Ohio for another 4 weeks after that.  She will require an insulin pump and will need pancreatic enzymes for the rest of her life.  She will be expected to travel back to Ohio every 3 months for the first year, every 6 months for the second year, and once a year every year after that for follow-ups.  This is all a small sacrifice if it gets rid of the pain she endures every day.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.