Reviewed by N. Scott Adzick, MD, MMM, FACS, FAAP, Alexander Y. Coe, MD, MEd and Katherine Lord, MD

For 8-year-old Kallaway, life was a series of flips, vaults and perfect landings. A competitive gymnast since age 3, Kallaway was used to defying gravity and pushing her limits. But her momentum came to a sudden halt during training camp last June in Missouri.  

What began as a few moments of dizziness on the mat – Kallaway felt “fuzzy” and blankly stared off in space – was initially dismissed as heat exhaustion. She was given Gatorade and told to rest for a few minutes before joining her teammates.

After practice, Kallaway’s mom Lindsey brought her to a nearby emergency room, where Kallaway was diagnosed with low blood sugar (hypoglycemia) and told to follow up with her pediatrician. For the next few days, Lindsey kept a close eye on Kallaway, making sure the young athlete had plenty of food and rest. 

After 18 hours of travel back home to Maine, Kallaway quickly fell asleep at home. The next morning, Lindsey found her daughter unresponsive. “I couldn’t wake her up,” Lindsey recalls. “It was a parent’s worst nightmare.”

Parent’s worst nightmare

“I kept yelling her name,” Lindsey said. “She’d come out of it for a second, start crying and then she’d pass out again.” 

Terrified, Lindsey quickly called 911. Within minutes, a rescue team arrived. Then Kallaway’s body seized and convulsed. The paramedics quickly took over as more help arrived. The next few minutes felt like hours as nearly a dozen emergency responders rushed to help. 

As Kallaway’s seizure eased, her blood sugar levels plummeted to 41 – dangerously low. She was rushed to the local hospital.  

Once in the emergency room (ER), Kallaway’s blood sugar levels were re-tested and clinicians administered glucose to raise her levels. When Kallaway became responsive, she started crying. “She had no idea where she was or what was happening,” Lindsey said.  

Over the next few hours, doctors stabilized Kallaway and cleared her to go home and follow up with her pediatrician the next day. Lindsey worried about another glucose crash and talked to her daughter’s nurse who recommended the family buy an easy-to-use blood glucose monitor and check Kallaway’s levels every two hours. Anytime it dipped below 80-85, the nurse said Lindsey should encourage her daughter to eat.  

Plummeting blood glucose

The next day, Kallaway saw her pediatrician who referred the family to a local endocrinologist in Maine. The next available appointment was in August, more than a month away. The pediatrician encouraged Kallaway’s family to take her to the ER any time her glucose levels dipped below 70.   

Within a week, Kallaway visited the ER four more times with low blood sugar. No matter how much or how often Kallaway ate, her glucose numbers refused to stay in a safe zone.  

An ER doctor told Lindsey the repeated ER visits were not working; Kallaway needed to see a specialist ASAP. He called a colleague at Bangor Hospital and scheduled a visit the next day. 

At the endocrinologist’s office in Bangor, Maine, the family spent four hours going over details about the recent events. Kallaway was placed on a blood glucose monitor. Still, her blood sugar levels continued to drop dangerously low.  

“One morning, Kallaway had scrambled eggs with cheese, granola, yogurt, fruit and orange juice for breakfast,” Lindsey said. “In 20 minutes, her blood glucose went up to 154 – which is normal. But 20 minutes later, it went down to 80. Food was no longer sustaining her glucose levels.”

When Lindsey called the endocrinologist again, she was instructed to bring Kallaway to Bangor Hospital for more extensive testing. It was during this visit that Kallaway was diagnosed with hyperinsulism, a rare condition where the pancreas produces too much insulin and causes low blood sugar. Doctors also suspected Kallaway had an insulinoma – a rare tumor on the pancreas that was causing her blood sugar to crash so suddenly – but did not have the imaging technology to find the tiny tumor.

Kallaway spent the next 18 days at Bangor Hospital while doctors struggled to stabilize her enough for transport. Her endocrinologist had previous experience working with experts at the Congenital Hyperinsulinism Center at Children’s Hospital of Philadelphia (CHOP) and knew the team had the advanced diagnostics and surgical expertise to find and remove the insulinoma she believed was causing Kallaway's erratic condition. The doctor arranged for Kallaway to be LifeFlighted to CHOP.

Testing and treatment at CHOP 

On July 24, Kallaway arrived at CHOP to a team of hyperinsulinism experts including N. Scott Adzick, MD, MMM, FACS, FAAP, Surgeon-in-Chief at CHOP and a national leader in surgical treatment for hyperinsulinism and related conditions. 

The team examined Kallaway, reviewed her earlier imaging tests and ordered CT, MRI and PET scans. All the tests failed to identify the lesion suspected to be causing Kallaway’s condition.

The team ordered an endoscopic ultrasound (EUS) to scan the pancreas directly. Alexander Y. Coe, MD, MEd, a pediatric gastroenterologist with advanced training in pediatric endoscopy, performed the EUS and found the small tumor on the tail of Kallaway’s pancreas. This information provided the critical clue needed for the CHOP team to develop a surgical plan. Within 24 hours of her arrival at CHOP, Kallaway’s surgery was scheduled.  

“As scary as the whole experience was – with Kallaway so sick and us so far from home – knowing the team at CHOP was prepared to fix her was the best feeling,” Lindsey said. 

On Aug. 8, Dr. Adzick successfully performed surgery and removed the 6mm by 8mm lesion (about the size of medium ball bearing). Dr. Adzick was able to save 97% of Kallaway’s pancreas. This meant the pancreas could retain its function and would prevent her from developing diabetes.  

As Kallaway recovered at CHOP, nurses and child life specialists cared for her and kept her entertained. She played bingo and diamond dots and celebrated her 9th birthday at the hospital. 

When she recovered from surgery, Kallaway underwent a 36-hour supervised diet – called a “cure fast” – to determine if her body could regulate insulin production by producing ketones correctly. The test was performed under the watchful eye of Katherine Lord, MD, pediatric endocrinologist and Medical Director of the Inpatient Endocrinology Service.

At hour 31, Kallaway’s body began correctly producing ketones. She was released the next day and returned home to Maine. 

Outcome and recovery

Today, 9-year-old Kallaway is cured. She requires no medication, no blood sugar monitoring, and has no dietary restrictions.  

By late fall – not even 6 months after surgery – Kallaway was cleared to return to competitive gymnastics. She was thrilled to return to the pastime she loves.

At her first gymnastics meet, she competed in all four events (floor, vault, bars and beam), won a trophy and four medals, and placed 4th overall in her age group.  

While Kallaway is doing well today, she knows other kids aren’t as lucky. To help researchers learn more about hyperinsulinism and insulinomas, Lindsey and Kallaway consented to donate tissue from her surgery to science.  

“We can’t thank CHOP enough for saving Kallaway’s life and allowing her to return to a normal childhood,” Lindsey said. “From Dr. Coe finding the tumor, to Dr. Adzick skillfully removing it and preserving most of her pancreas. From the child life staff who encouraged her to play amid this super stressful time, to all the nurses and support staff who supported us along the way. CHOP is truly an amazing place, and we’ll forever be grateful to them for saving Kallaway.”