Miracle Kids 2026: Taelynn Rotan
Every time a child comes home on an intravenous nutrition (IV) line or a feeding tube, families step into a vital, at times overwhelming, but ultimately empowering, role in their child’s care. Treatment routines require dedication and vigilance to prevent central line infections, broken central line catheters, and other technical obstacles on top of the already demanding job of caring for a child with medical complexity.
“It’s common for families to do everything right and still encounter setbacks, which can include readmission to the hospital with a bloodstream infection,” said Megan Gabel, MD, associate professor in the Division of Pediatric Gastroenterology, Hepatology & Nutrition (GI) at Golisano Children’s Hospital.
Most families hope to navigate the goal of achieving full nutrition in weeks. For others this may take months, with them ultimately striving to meet their child’s needs with an oral diet. At times, IV or tube feeding is an ongoing way of life.
For Kimberly Rotan and her 10-year-old daughter, Taelynn, the journey lasted eight years. Operating mostly on her own, Kimberly safely navigated Taelynn through the early days—when she could barely tolerate a teaspoon of formula— to her becoming a fully energetic young girl with an impressive appetite for crab legs. Miraculously, there were few complications along the way.
“She really defied all of the odds,” said Gabel.
An Unthinkably Tiny Start
Taelynn was born at 34 weeks’ gestation. Shortly after birth, she was diagnosed with Type 3b intestinal atresia, a congenital condition in which a portion of the intestine is either absent or severely obstructed. In her 13th hour of life, she required surgery, led by Walter Pegoli, MD, to alleviate the life-threatening blockage.
“We were like, ‘huh?’ when we gave birth to her, because all the signs were positive up until then,” said Kimberly. “We had to adapt and go with the flow.”
Taelynn’s journey, however, was only beginning. At six weeks of age, she had to return to the operating room for another procedure to address the blockage through dilation using interventional radiology.
Despite these interventions, Taelynn experienced severe feeding intolerance. She was unable to manage feeding by mouth, and a G-tube provided little relief. She could take only 1 mL of formula per hour—the equivalent of about one teaspoon in five hours—and required total parenteral nutrition (TPN). TPN bypasses the gastrointestinal system entirely and delivers nutrients directly to the bloodstream.
After 80 days in the NICU, Taelynn was discharged, with Gabel and the GI division leading her treatment. The goal was to gradually increase Taelynn’s feeding through the G-tube, but the starting point was not encouraging. She appeared to be suffering from either a persistent intestinal narrowing or a motility disorder affecting gut tolerance. There was no guarantee she would ever come off IV nutrition or avoid additional surgeries or even intestinal transplantation.
“No infant in our care has ever gone home with less enteral feeding than Taelynn,” said Gabel.
A Mother’s Masterclass in Care
Over the next several years, Kimberly, Taelynn, and Taelynn’s older brother, Tyan, focused on helping her get better. Supporting them was the GCH GI team, including Gabel, nurses, nurse practitioners, dietitians, and social work resources, but the key to Taelynn’s success would be the family’s ability to stay vigilant following the treatment plan and avoiding complications.
“The goal is similar to a see-saw: slowly increasing the G-tube feeding while decreasing the TPN,” said Kelly Russo, RD, a dietitian at GCH.
Kimberly was ready. She had been working as a home health aide at Fairport Baptist Home. While she ultimately had to leave her job to care for Taelynn full time, the skills she gained in that profession helped her manage the situation at home.
“I loved taking care of people, and I felt up to the challenge,” she said.
Key to managing this transition was Jessie Brault, a home nurse who taught Kimberly how to administer the G-tube and Broviac central line.
“Jessie was a huge part of everything,” said Kimberly. “She taught me how to feed Taelynn through both the G-tube and TPN lines. Without her I would have been lost.”
During that first year, Taelynn gradually tipped the balance on the feeding see-saw. By age one, she was tolerating 30 ml per hour, a significant improvement. Most important, despite the infection risk presented by having a central line for TPN, Taelynn remained healthy and never developed a fever that would have required an emergency visit and hospital admission.
“She had zero central line-associated bloodstream infections during her course, which is extraordinary,” said Gabel. “That type of success requires meticulous sterile-dressing changes, close attention to detail, and, of course, some element of luck.”
In addition to the GI team, Kimberly received long-term assistance from Daystar, which provides specialized daycare for children with medical complexity, during Taelynn’s early years. Daystar offered both medical care and education for Taelynn, as well as some much-needed relief for Kimberly until Taelynn turned five, along with feeding guidance as she grew. “I would recommend Daystar to anyone in the world,” said Kimberly.
The GI team also collaborated regularly with Daystar to coordinate feeding plans and ensure Taelynn was receiving consistent care.
“There was nowhere else Kimberly would have felt comfortable leaving her,” said Gabel.
“Treat the Patient, not the X-Ray”
After making strong progress in her first year of life, Taelynn experienced a setback. Her feeding plateaued at 30 ml per hour, and her vomiting increased. Imaging showed a narrowing of her intestines, and the GI team scheduled a dilation procedure and possible surgery with Gabel and Pegoli.
In a twist of fate, Taelynn developed a fever two days before the surgery, forcing it to be canceled. Shortly afterward, Taelynn began making progress again, and the surgery was never rescheduled.
“If you got an X-ray of Taelynn today, it may still look abnormal—but we treat the patient, not the X-ray,” said Gabel.
Over the next several years, Taelynn continued to make gradual progress. First, she was able to come off IV nutrition, and then she slowly transitioned from tube feeding to oral feeding.
Throughout this process, the GCH PANS (Pediatric Advanced Nutrition Support) program maintained close oversight. Each week, a team including Gabel, dietitians, and nurse practitioners met to review lab results, adjust nutrition plans, and recommend clinical changes.
They found a willing partner in Kimberly, who carefully implemented the feeding plan while managing her own health challenges.
“Dr. Gabel and Kelly Russo were the best team ever,” she said.
After years of progress and collaboration, Taelynn was finally able to come off the G-tube and feed 100 percent orally at age 8, in June 2024.
A Fashionista with a Love for Crab Legs
The next step in Taelynn’s journey would be the monitoring of the transition to oral feeding. There was little doubt she was ready and eager for the challenge.
“Taelynn always had a strong desire to eat. Her medical diagnosis just made that a slower process for her,” said Russo.
In Taelynn’s case, she responded exceptionally well. She embraced
oral feeding with few setbacks and quickly developed a love for crab legs. Family outings to Red Lobster or Juicy Seafood in Henrietta have now become the norm.
“We’ll order two pounds and she’ll eat them all,” said Kimberly.
Beyond her healthy appetite, Taelynn is active in many areas of life. She participates in gymnastics, enjoys running, and is part of the Monroe Community College Girls Who Run program. She also isn’t shy about showing off her fashion sense. “She is always dressed to the nines,” said Gabel.
In addition to Kimberly’s exceptional care, Gabel credits Taelynn’s success to her incredible resilience.
“I tell families that are just beginning this journey that I’ve seen kids start from almost nothing and go on to eat normally and live active lives,” she said. “Taelynn is the inspiration for that.”