Pancreas Care

Patient Stories | Bella and TPIAT

Bella’s Mission to Help Other Kids like Her with Chronic Pancreatitis

Most every kid deals with a fear of monsters at some point. Monsters under the bed or in the closet. Monsters in movies or books that later make a special guest appearance in their dreams.

As a carefree 12-year-old, Bella was old enough to know that she didn’t have to worry about imaginary monsters. Almost a teenager, she was focused on what most kids her age think about: friends, family and school.

But after more than a year-long struggle with chronic pancreatitis—Bella knows that monsters can indeed be real—and while they may be scary at first, they might just save your life.

Finding the Best Care Possible

As Bella’s painful episodes increased, her parents searched for and consulted with many pancreas experts in hopes of finding answers for their daughter. Their journey eventually led them to our specialized Pancreas Care Center team. 

Bella and her family made several visits to Cincinnati Children’s from their home in Miami, FL. Her diagnosis changed from acute to chronic pancreatitis. Bella's expert care team knew that surgery was her best option. But it wasn’t going to be an easy road for her.

The surgery, known as a pancreatectomy and islet cell autotransplantaion (TPIAT), is only used in rare and severe cases. It involves removing the entire pancreas and reconstructing the gastrointestinal tract. After the pancreas is removed, it’s taken to a lab where the islet cells (which are responsible for producing insulin and other hormones) are extracted and then transplanted into the patient’s body, where they continue to perform essential functions of the pancreas.

“I had to undergo multiple procedures in just a month and a half in order to prepare,” Bella says. “On the day of the surgery, I looked at my parents as they wheeled me away and said to them, ‘I'm ready for the dance.’”

After a 12-hour procedure, Bella woke up with a new dance partner, fondly nicknamed the “MONSTER” by those in the Pediatric Intensive Care Unit (PICU).

Made of several different machines and more than 32 lines that are constantly pumping fluids and medicines into her while draining excess fluids, this “MONSTER” wasn’t the thing of nightmares for Bella.

It meant she was getting the care she needed. It meant a successful, life-changing surgery that would help relieve her constant pain. For Bella, it symbolized hope for her future.

“After going through something like that, you're just so grateful for the work that the surgeons, doctors and nurses have done and continue to do. Thank God for the nerds of this world!” Bella says. “Through my darkest times, they helped me heal by combining compassion and humor with medicine.”

Bella’s surgeon, Gregory Tiao, MD, feels it’s a privilege to work with patients and families who are afflicted with this challenging condition.

“The grace and gratitude that Bella and her family showed during her recovery were remarkable,” Dr. Tiao says. “Bella approached each day with a positive mindset, and her family made each interaction fun.”

Some of Bella’s post-surgery milestones included sitting in a chair within 24 hours of surgery, dancing with the "MONSTER" in under 48 hours and being able to come off strong pain medication by her fifth day of recovery, which is unheard of in cases like hers.

Bella’s Giving Hope Fundraiser Takes Off

Another milestone for Bella? Setting a goal to help other patients, like her, who rely on the expert, compassionate care that we’re known for at Cincinnati Children's.

“We’ve always taught Bella to think of others,” says Jessica, Bella’s mom. “We’re so proud she made it her mission to raise money so that parents and children experiencing this journey don't have to worry about anything other than their kids." 

Bella’s initial goal was to raise $5,000 through our Giving Hope fundraising program. It blew up instantly. Within hours after posting her online Giving Hope page, Bella discovered that the amount totaled an astonishing $37,000—and it’s still climbing. 

Maisam Abu-El-Haija, MD, MS, director of our Pancreas Care Center, couldn’t believe it when Bella shared the news.

“Seeing Bella recover brings immense joy to all of us who took care of her and to all who supported her,” says Dr. Abu-El-Haija. “She inspired me and many others in how she turned the helplessness one may feel from pain to a positive energy and a shining power to make a change.”

It’s not often that an online fundraiser spreads so quickly. But Bella’s message is going far—and people are answering her call to help the kids who need it most. She is grateful for everyone's support. 

“I want to thank my team and my nurses in the PICU and on the floor, along with the family and friends who have joined us on this journey,” says Bella. “This isn’t over." 

(Published August 2022)