In May, Jennifer Powell loaded up, buckled her daughter Bethany in the car and set the GPS for Richmond – a 16-hour drive from her home in Arkansas.
She’d never been to Virginia, but was on a mission to get the care her daughter needed.
Bethany was 8 years old in October 2018 when she all of sudden began having excruciating pain and vomiting blood. For the next 20 months, 16 of those in hospitals, Jennifer and her husband searched for answers for their daughter – the youngest of their 10 children, 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,” said Jennifer. “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 GI issues, searching for common denominators. 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,” said Jennifer. “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
Dr. Marlon Levy, a transplant surgeon and director of VCU Health’s Hume-Lee Transplant Center, began reviewing Bethany’s charts immediately.
“Arriving at a diagnosis for her intractable nausea, vomiting and apparent intense abdominal pain was exceedingly difficult, in part because of the challenges with communication. The multiple studies performed at her previous hospitals as well as here were not as conclusive as in other cases. A big part of the decision-making was the increasing and intense difficulty in treating her symptoms,” said Dr. Levy.
Bethany was eventually diagnosed with chronic pancreatitis, a severe and very painful condition. Thankfully, she was in the right place. Dr. Levy is a leading expert and pancreatectomy with islet cell autotransplantation (TP-IAT) is performed at very few children’s hospitals. The 12-hour procedure involves two phases. The first phase is removing the diseased pancreas and reconstructing the gastrointestinal tract. In phase two, islet cell clusters from the pancreas are isolated and preserved, then placed in the liver with the goal that the body will continue producing insulin and controlling blood sugar.
A delicate surgery and coordinated care for mom and daughter
While Dr. Levy and Hume-Lee are nearing their 50th TP-IAT procedure, Bethany was the first pediatric patient to receive the surgery. In addition to her small size, it was a more delicate operation than most due to her existing G-tube that they had to work around and their previously unrealized goal of trying to save her spleen. The successful operation took place on May 19, 2020, though the decision was made to remove her spleen to ensure a safe procedure.
As the transplant team planned for Bethany’s operation, our nursing team underwent training and preparations to welcome her to the pediatric intensive care unit where she spent the next five weeks following surgery. They provided pain management, wound care and diabetes care unique to Bethany’s post-surgical needs. They also helped her celebrate her 10th birthday!
“Everyone in the PICU bent over backward to train and prepare. They made us feel like Bethany was the most important patient they’d ever seen,” added Jennifer.
It was this commitment that provided Jennifer the comfort and security to leave her daughter’s side for the first time in more than a year and get some much-needed rest herself. Luckily, she didn’t have to go far. She was able to stay in one of the RMHC family 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,” said Jennifer. “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 also benefited from the full team of specialists at CHoR, with coordinated medical care including 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 in 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 for support. 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 in search of needed health care for Bethany.
As Jennifer and Bethany are now preparing to finally 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,” added Jennifer. “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 who loves butterflies, Peppa Pig, holding hands and making friends. She’s most excited to go swimming with her brothers and sisters, while Mom is eager to return to ‘normal life,’ including grocery shopping, cooking dinner for her family and everybody sleeping under the same roof.
Bethany will follow up with Dr. Levy via telehealth frequently for the foreseeable future, then annually after the first year. Everyone has become quite accustomed to this mode of health care delivery during COVID-19 and it will come in quite handy as the Powells settle into their new home several states away.
“Bethany will need to re-learn to eat and she’ll need continued focus on her diabetes, but her prognosis is excellent,” said Dr. Levy. “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.”