Kyler's Unstoppable Spirit: Beating Necrotizing Enterocolitis at Oklahoma Children's Hospital

In early July 2019, Kyler and Kolter, just 7 days old, were not expected to survive the night. Their color was off, and their tiny, premature bodies were failing from within. As their mother and medical staff at Oklahoma Children’s Hospital OU Health fought desperately to stop the deadly advance of necrotizing enterocolitis (NEC), the twins' prognosis was grim.

But the story of Kyler and Kolter began months earlier.

In February 2019, Amanda Kilgore of Carney, Oklahoma, received news she was pregnant with identical twins. The joy of this discovery quickly gave way to concern when doctors noticed the twins shared a single placenta, increasing the risk of complications. For Amanda, who had previously delivered a healthy baby at 36 weeks, this pregnancy would prove dramatically different, marked by constant monitoring, tragic loss, and a series of heart-stopping emergencies that tested the limits of modern medicine.

At just 29 weeks pregnant, Amanda's body began showing signs of early labor. For three consecutive Sundays, she made emergency trips to OU Health, where medical teams worked to delay delivery of twins Kyler and Kolter through steroid shots and various interventions. Each time, she would return home to her 1-year-old, knowing the precious cargo she carried was still too fragile for the outside world.

But at 33 weeks, there was no stopping nature's course. Through an emergency C-section necessitated by Kyler's breech position, the Kilgore twins entered the world on July 7, 2019.

A Tragic Turn of Events

The first week in the Oklahoma Children’s Hospital Neonatal Intensive Care Unit seemed deceptively routine for the premature infants. Both boys appeared to be progressing well, breathing on their own with only feeding tubes in their noses. Amanda split her time between the hospital and home, trying to balance the needs of her newborns with those of her toddler. But seven days later, that delicate balance shattered in a matter of hours.

One morning, a nurse noticed that Kolter’s color looked a little bit off.

Within an hour, both twins were fighting for their lives, their tiny bodies facing an enemy that Amanda had never heard of before that moment. As she rushed to Oklahoma Children’s Hospital, she found herself frantically googling three letters that would come to define this chapter of their lives: NEC, a serious condition that causes intestinal tissue to die.

“NEC is a massive inflammation and infection that can eventually lead to death of the bowel tissue or necrosis," said OU Health neonatologist Dr. Erynn Bergner, M.D., associate professor and fellowship program director for the Section of Neonatal-Perinatal Medicine and assistant medical director of Neonatal Nutrition at Oklahoma Children's Hospital. “While affecting between 3-10% of premature babies, its exact cause remains frustratingly elusive.”

The medical community's best understanding points to the vulnerability of premature infants' underdeveloped intestinal tissue and immune systems, but ongoing research continues to probe deeper into this condition.

The scene that greeted Amanda at the hospital that day remains seared in her memory. The hour-long drive had felt like an eternity, each minute weighted with fear and uncertainty.

"When we got there, we walked in the room, and the nurse was crying," Amanda said. "You don't usually see healthcare workers crying."

Doctors delivered the devastating news: neither twin was expected to survive the night. Despite the medical team's heroic efforts, Kolter passed away on July 15, leaving his family and medical team to pour all their resources and hope into saving his brother. For Kyler, this marked the beginning of a journey of survival.

"I've never seen a kid so sick in my life," Amanda said. "He had maxed out their ventilator settings on all their ventilators. He went into septic shock. His body swelled to three times his weight."

The once-tiny preemie became almost unrecognizable as his body struggled against the cascade of medical complications. However, the relentless nature of both the medical team and Kyler's will to live led surgeons to operate every three days, reopening his tiny body to remove dying tissue and fight the spread of infection.

These procedures, while necessary, meant constant vigilance and uncertainty. For nine weeks, Amanda couldn't even hold her baby – a separation that she filled by asking endless questions of the medical staff, absorbing every detail of his care. The medical response used to save Kyler was complicated in its scope and coordination.

"Kyler was very critically ill for a pretty extensive period of time,” said Dr. Bergner. “He had multiple people involved in his care."

The team at Oklahoma Children’s Hospital included neonatologists, clinical pharmacists, dietitians, nurses, respiratory therapists, pediatric surgeons, anesthesiologists and pain specialists – all fighting in concert to save one tiny life.

After 110 grueling days in the NICU, just before Halloween, Kyler finally went home – not as the healthy baby his parents had dreamed of, but as a survivor with an ongoing health journey ahead. His discharge came with an ileostomy bag, a regimen of heart medication for congestive heart failure and short gut syndrome, a condition resulting from the extensive removal of his intestines that would affect his ability to absorb nutrients for the rest of his life.

Fighting For Answers to NEC

Yet despite these challenges, or perhaps because of them, Kyler has developed into a remarkable child.

"He's a great kid," Amanda said. "He likes to make people laugh. He's real funny. He's always trying to play tricks on people and joke with them."

While developmental delays and health challenges persist, Kyler's survival story has become an example of modern medicine and unwavering parental dedication. His regular visits to Oklahoma Children's Hospital continue, but now they're brightened by his favorite therapy dogs.

Treating and preventing NEC continues on multiple fronts at OU Health, with research and prevention at the forefront of medical efforts. At Oklahoma Children's Hospital, initiatives like Project Home (Home On Milk Every Time) emphasize the critical role of breast milk in preventing NEC. Project HOME is an ongoing, multi-institution quality improvement project with the Children’s Hospitals Neonatal Consortium (CHNC) and 36 Level IV NICUs across the United States and Canada to increase rates of breastfeeding at discharge.

"Although we don't know specifically what causes NEC, we do know that breast milk is preventive," Dr. Bergner said. "It has a lot of factors that help with the immune system and preventing infections and inflammation."

This understanding has led to a comprehensive approach to infant nutrition, supported by the state-of-the-art Quincy la Norman Nutrition Center. Named after a former NICU patient now in her early 20s, the center serves as a resource in the hospital's fight against conditions like NEC. It provides specialized feeding preparation for infants throughout the hospital, supporting both mothers providing their own milk and coordinating with the Oklahoma Mother's Milk Bank for donor milk when needed.

The dedicated approach to infant nutrition represents just one aspect of the hospital's multi-faceted strategy to combat NEC and support premature infants' development.

Hope for the Future

For families currently navigating the terrifying waters of a NICU stay, Amanda said asking questions and getting answers from the Oklahoma Children’s Hospital staff and doctors became her anchor.

"Ask as many questions as you need to make you feel a bit better so you understand it completely, so that you can help your kid," she said.

Today, at 5 years old, Kyler tells everyone he's famous, thanks to being highlighted in a commercial for Oklahoma Children’s Hospital. While his mother laughs at this innocent assumption, she holds onto hope for his future with the same tenacity that helped her through those NICU days.

Kyler's story is one that spotlights the fragility of life, the resilience of the human spirit and the extraordinary advances in medical science at Oklahoma Children’s Hospital that make such survival possible. While the loss of Kolter remains an ever-present grief, his twin brother's survival continues to inspire hope for other families facing similar battles.

"I hope that he grows up to do anything he wants to," Amanda said. “Right now, he dreams of becoming a police officer. I secretly hope he might consider becoming a doctor instead.”

Learn more about comprehensive, multidisciplinary pediatric care at Oklahoma Children’s Hospital or speak to an expert by calling (405) 271-KIDS.