Jun 23, 2020, 10:49:53 AM CDT Jun 23, 2020, 11:58:44 AM CDT

Diagnosed with chronic lung disease, Katie shows she's a tiny but mighty fighter

Katie finds the care she needs to help her breathe easier at Children's Health

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Katie Katie

From the day she was born Katie has shown everyone exactly what a warrior looks like. Born in May 2015, at just under 30 weeks with her twin, Stella, Katie was diagnosed with severe bronchopulmonary dysplasia shortly after birth which progressed to chronic respiratory failure and chronic lung disease. She spent the first eight months of her life in the neonatal intensive care unit (NICU) at a local hospital and relied on a ventilator to help her breathe and a gastrostomy tube (G-tube) for her nutritional needs. 

"Katie's lungs didn't have enough amniotic fluid to build them up and develop properly in utero," Katie's mom, Eva, says.

Katie in PICUAt 8 months old, Katie was discharged from the NICU and admitted to Our Children's House Dallas. For the next two months, her care team worked to lower Katie's ventilator settings and help her parents learn how to care for her medical needs before she went home.

Katie finally joined her twin sister, Stella, at home when she was 10 months old, but she still required 24-hour nursing care. Over the next several months, Katie was monitored closely by a team of experts at Children's Health℠ and UT Southwestern, including specialists from Pulmonology, Gastroenterology, Endocrinology and Ear, Nose and Throat (ENT).

A temporary setback won't hold Katie back

In December 2016, Katie contracted respiratory syncytial virus (RSV) which caused her airways and lungs to fail, and was admitted to the intensive care unit at Children's Medical Center Dallas. A day later, she was put on a highly specialized type of life support system called Extracorporeal Membrane Oxygenation (ECMO). She remained sedated and on ECMO for 11 days.

"There were many times when doctors told us they had done everything medically possible for Katie and were trying things outside of the box to help her," Katie's mom, Eva says. "There were fears of brain bleeds and strokes while she was on ECMO, but miraculously, it did not affect her brain in any negative way at all."

Katie regained consciousness but remained in the ICU for the next three months while she recovered. During that time, Eva remembers feeling discouraged by what appeared to be a significant setback in attempts to wean Katie off her ventilator – but she was buoyed by a conversation she had with Andrew Gelfand, M.D., Chief of Respiratory Medicine at Children's Health℠ and Associate Professor at UT Southwestern.

Katie and Dr.Gelfand"Dr. Gelfand was one of the first pulmonologists who visited Katie when she was in the NICU and one of the rotating doctors at the vent clinic at Children's Health that we would see every couple of months," Eva says. "When Katie was in the hospital post-ECMO, Dr. Gelfand came to visit and talked to me about what we had been through and what Katie's future looked like. From that moment on, he said that he wanted to be her primary pulmonologist and we completely agreed!"

Over the next several months, Dr. Gelfand worked with Katie and her family to continue to wean her off her ventilator, and by November 2017, Katie was breathing on her own.

"Katie is a very tough little girl," Dr. Gelfand says. "Not only did she have severe lung disease due to her prematurity, she also has a very reactive component like asthma. Once we were able to get her reactivity under better control, we were able to slowly and methodically wean her off the ventilator."

Katie lives life with a warrior spirit

In May 2018, Katie had her tracheostomy (trach) tube removed. As she grew stronger, Katie's warrior spirit remained evident as she worked with speech, physical and occupational therapists twice a week to focus on swallowing, speaking and, quite simply, how to be a kid.

"I describe to people that although Katie just turned 5, she really didn't start ‘living life' until after her stay with RSV at Children's Health," Eva says. "She came home and had to restart everything. In the last few years, she has made amazing progress."

Katie on swing at parkBecause her lungs were compromised at birth, Katie still experiences severe asthmatic symptoms which she is typically able to manage through twice daily inhaler medications or nebulizer breathing treatments when she is sick. Katie had her G-tube removed in July 2019 and continues to be closely monitored by her team of doctors at Children's Health, including Dr. Gelfand, on a regular basis.

"There's no question that the determination of her mother and the great support of her entire family and care team have played significant role in her recovery," Dr. Gelfand says.

Today, it seems as if nothing can hold this 5-year-old back. She loves Starbucks "frapapachinos," as she calls them, and when she isn't painting or doing puzzles, Katie can be found on the swings at the nearby playground, flying around on her scooter or pushing her twin baby dolls around in her double baby stroller.

"I can't wait for her to fully understand how special her journey of strength and success truly is," Eva says. "She is our miracle. Our survivor. Our warrior."

Learn more

The nationally ranked Pediatric Pulmonary Medicine program at Children's Health offers expert care for your child's respiratory condition. We focus on providing multidisciplinary and family-centered care to meet all your child's needs. Learn more about our pulmonary program and services.

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breathing, chronic condition, inhaler, intensive care, patient story, treatment

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