Our son, Donovan, was born at 26 weeks (1 lb, 8 oz) due to severe and worsening pre-eclampsia.
He spent 231 days in Akron Children's NICU between August 2013 and March 2014. Donovan's primary struggle was his lungs. Due to scarring from the ventilator that he needed to breathe due to his extreme prematurity, he was diagnosed with severe chronic lung disease (bronchopulmonary dysplasia) and eventually required a tracheotomy to make long-term mechanical ventilation easier and safer.
Donovan came home from the NICU with a tracheostomy and a feeding tube. He required mechanical ventilation and supplemental oxygen for a few years in the home as his lungs continued to grow and heal. It was later discovered that, as a result of Donovan's prolonged intubation in the NICU, his airway had become severely narrowed. He was diagnosed with grade IV subglottic stenosis, which meant that his airway was far too narrow to allow for him to breathe on his own without a trach tube keeping things open.
With his lungs healed, Donovan faced another hurdle: the reconstruction of his airway. Our family sought the medical expertise of Cincinnati Children's Hospital and Medical Center, where their airway team is world renowned for their tracheal reconstruction procedures. Donovan underwent a double-stage laryngotracheal reconstruction in the summer of 2016. Thankfully, the procedure was a success, and his trach was removed in the spring of 2017. His feeding tube was removed in the summer of 2018.
Today, Donovan is a funny, energetic, resilient kid who loves dinosaurs, reading, and swimming. We often look back on his long and complicated medical journey in awe of his strength, with thanks to the Big Guy Upstairs, and with deep gratitude to all of the medical professionals who made his very existence and development possible. We are so grateful that he is here with us and thriving.
Andrea is a parent mentor for these conditions: Bronchopulmonary Dysplasia, Hypothyroidism, Lung Disease, Oxygen Dependence, Subglottic Stenosis, Tracheotomy.
Andrea is a mentor for these care services: Ear Nose Throat (ENT), Endocrine, Feeding and Nutrition, NICU, Palliative Care, Pulmonary, Trach / Ventilator
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