A'drah’s Story: Meeting Milestones with Mom by Her Side
Rashanda describes her daughter A’drah as "a feisty little girl from day one”—and rightly so. Born at 24 weeks and 5 days, and weighing only 1 pound and 8 ounces, A'drah has spent her first few years of life achieving milestones that once did not seem possible.
While on vacation in South Carolina in 2016, Rashanda woke up on the morning of her birthday with contractions nearly 16 weeks ahead of her due date. She was rushed to a local hospital, where doctors tried to stop the contractions, but four days later A'drah was born prematurely.
After a month in South Carolina, A'drah was transferred home to Illinois and eventually to the Neonatal Intensive Care Unit at Ann & Robert H. Lurie Children's Hospital of Chicago.
At Lurie Children’s, doctors diagnosed A'drah with tracheomalacia, a condition where the tracheal rings are not shaped properly, and are usually flattened, making them very collapsible from positive pressure forces, like coughing or sneezing.
"Her healthcare team determined she had a very narrow airway and her lungs were not as strong as they should be. The team decided that A'drah was in need of a tracheostomy," Rashanda said, referring to an operation in which a small opening is made into the windpipe (trachea) through a cut made in the skin on the neck.
While severe tracheomalacia in infancy may require a tracheostomy tube to keep the airway open, like in A’drah’s case, it is rare. Once she underwent the tracheostomy and her skin had healed, a tracheostomy tube was placed in the hole in her neck–or stoma—to support her breathing.
For four years, A'drah lived tethered to her trach while Rashanda cautiously looked over and cared for her daughter.
Through it all, Rashanda said "A'drah has remained her sassy, spunky, strong-willed self. The trach has never held her back."
As A'drah's lungs continued to get stronger, she required less oxygen. Her care team was thrilled to tell A’drah and Rashanda that in the fall of 2020, she could begin the process of having her trach removed.
In November 2020, A'drah had her tonsils and adenoids removed before Dr. Jennifer M. Lavin, Otorhinolaryngology-Head & Neck Surgery, and Lurie Children's Aerodigestive Program team performed reconstructive airway surgery to widen her airway.
"Each step of the way in this journey, there has been more light shone on us,” Rashanda said. “When we were first in the NICU, it felt like we were in a dark tunnel. Over the years, we were treading through the tunnel together. As A'drah started school and reached other milestones, the light started to shine a bit more. "
The day A'drah's trach was removed “was so overwhelming,” Rashanda said. “All the light was shining down at once. It was just this huge relief, like, 'This is it!'"
Today, Rashanda and A'drah are at home together, enjoying and adjusting to life without depending on any medical technology or emergency equipment.
"I look at her and can't believe how far we have come together. Her team at Lurie Children's listened to me every step of the way," said Rashanda. "My hope for A'drah is that she knows she can be whatever she wants and to live a happy, healthy life."
Lurie Children's Aerodigestive Program serves children who have complex airway, pulmonary, upper digestive, sleep and swallowing disorders. The multidisciplinary team of experts includes specialist from otolaryngology-ENT, pulmonary medicine, gastroenterology, general pediatric surgery, speech-language pathology, critical care, the Center for Autonomic Medicine and others who collaborate to provide the best possible care for the children they serve.
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