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Family travels 900 miles during pandemic for child's rare, life-changing pancreatic surgery

CHoR Patient Bethany

Family tried seven hospitals before finding successful treatment at Children's Hospital of Richmond at VCU

In May, Jennifer Powell loaded up, buckled her daughter Bethany in the car and set the GPS for Richmond — a 16-hour drive from their home in Arkansas. They’d never been to Virginia, but Jennifer was on a mission to get her daughter the care she needed.

Bethany was 8 years old in October 2018 when all of sudden she felt excruciating pain and began vomiting blood. Over the next 20 months and seven different hospitals, Jennifer and her husband searched for answers for their youngest daughter, whom they call “Mei Mei,” or “little sister” in Chinese.

A family desperate for relief

“It’s been a very difficult, painful road for us,” Jennifer said. “Bethany has special needs and could not accurately express what she was feeling. On top of that, she had a very complex presentation. As we met with doctors looking for help, we were dismissed over and over again.”

The Powells were prepared to do whatever it took to find relief for their daughter. In addition to seeking expertise at multiple medical centers, Jennifer conducted her own research. She joined online groups focused on gastrointestinal (GI) issues, searching for common medical issues. That’s when she came across Jolie Dunham’s story.

“Jolie’s situation sounded exactly like what Bethany was experiencing. I reached out to her, we became friends and she connected me with Dr. Levy,” Jennifer said. “Before Bethany even became his patient, Dr. Levy really invested in and cared about her. He was willing to come alongside us and help us.”

Finding answers at CHoR and Hume-Lee Transplant Center

Marlon Levy, M.D., a transplant surgeon and director of VCU Health’s Hume-Lee Transplant Center, began reviewing Bethany’s charts immediately.

Arriving at a diagnosis was exceedingly difficult, in part because of the challenges with communication, Dr. Levy said. The studies performed at other hospitals provided no answers, and Bethany’s symptoms were becoming more frequent and difficult to treat.

Bethany was eventually diagnosed with chronic pancreatitis, a severe and very painful condition. Doctors needed to removed Bethany’s diseased pancreas, yet also maintain Bethany’s ability to produce insulin. The answer was pancreatectomy with islet cell autotransplantation (TP-IAT). Dr. Levy is a leading expert in this surgery, which is performed at very few children’s hospitals.

The 12-hour procedure took place May 19, 2020, in two phases. In the first phase, doctors removed Bethany’s diseased pancreas and reconstructed her GI tract. In phase 2, they removed healthy islet cell clusters from her pancreas and placed them in her liver — in effect, giving her islet cells a new home. From her liver, Bethany’s islet cells would continue to produce insulin and control Bethany’s blood sugar.

Being a child posed additional challenges

While Dr. Levy and Hume-Lee are nearing their 50th TP-IAT procedure, Bethany was their first pediatric patient. As a child, Bethany presented new challenges. She was a lot smaller than their other patients, and they had to work around her G-tube — a tube leading directly into her stomach for food and medications. They also encountered problems with her spleen, which they had to remove. Nonetheless, the surgery was successful.

From OR to ICU, every step carefully planned

As the transplant team planned for Bethany’s operation, the nursing team underwent training and preparations to welcome her to the pediatric intensive care unit. There she spent the next five weeks. They provided pain management, wound care and diabetes care unique to Bethany’s post-surgical needs. They also helped celebrate her 10th birthday.

“Everyone in the PICU bent over backward to train and prepare,” Jennifer said. “They made us feel like Bethany was the most important patient they’d ever seen.”

It was this commitment that provided Jennifer the comfort and security she needed to leave her daughter’s side for the first time in over a year for some much-needed rest. Luckily, she didn’t have to go far. She stayed in one of the Ronald McDonald House rooms on-site, just steps away from the PICU.

“I didn’t realize how much I needed the rest. My husband and I had barely slept for 11 days straight when Bethany and I arrived here. Our daughter had been screaming in pain. We were in total crisis,” Jennifer said. “To be off duty when I’ve been on 24/7 for 16 months, and for my heart to trust the people in the hospital, is a big deal. I felt like they had her and I could let go a little bit. We were all in this together.”

Bethany benefited from the full team of specialists at CHoR. Her coordinated care included gastroenterology, endocrinology and palliative care, as well as child life, social work and other support services.

A new home for a newly reunited family

COVID-19 added an extra wrinkle to the situation. The pandemic didn’t factor into the Powells’ decision to bring Bethany for the urgent surgery, but the associated visitation restrictions did impact the number of family members who could be present. While Jennifer made the trip to Virginia, her husband and nine other children stayed back and made the move from Arkansas to Florida, a previously-planned relocation.

As Jennifer and Bethany are now preparing to go home — to their new home — they credit Dr. Levy for giving them their life back.

“We’ve been at top institutions throughout the country and did not receive the level of care that we’ve gotten here. Bethany is not textbook and that can be really hard,” Jennifer remarked. “This team didn’t turn away from us. They looked at her as an individual with a very unique history and acknowledged the pain we’ve been through on this long, hard road. I don’t have adequate words to express what that means to us.”

Bethany is back to her delightful, joyful self. She loves butterflies, Peppa Pig, holding hands and making friends. She’s most excited to go swimming with her brothers and sisters. Her mom is eager to return to a “normal life,” such as grocery shopping, cooking dinner for the family and everybody sleeping under the same roof.

Bethany will follow up with Dr. Levy via telehealth, a common mode of communication during COVID-19. They’ll see each other frequently the first year, annually after that. Telehealth will come in handy as the Powells settle into their new home several states away.

“Bethany will need to relearn to eat and she’ll need continued focus on her diabetes, but her prognosis is excellent,” Dr. Levy said. “All of us on the team are delighted to have been able to help her and her family. We want nothing more than for her to be free of hospitals and all of us medical professionals, and to live her life as a healthy child.”