When four-year-old Sam splashes in his wading pool and explores his backyard, these routine moments of childhood playtime are almost overwhelming, in the best possible way, for his parents Cathy and Matt.
“I never thought this day would come,” Cathy said.
Sam spent the first eight months of his life in hospitals, often tethered to an assortment of tubes and cords.
Before he was born, Sam was diagnosed with Down Syndrome and a congenital heart defect. He was born about 7 weeks prematurely in October 2016 and spent the first four months of his life in a neonatal intensive care unit near his Genoa, Illinois, home. Because he had trouble breathing on his own, he was attached to a ventilator. Among other complications, Sam needed a blood transfusion and a nasogastric (NG) tube to help get proper nutrition.
By January 2017, the baby boy was referred to Ann & Robert H. Lurie Children’s Hospital of Chicago for heart surgery. While the procedure went well, Sam’s care team discovered Sam’s inability breathe on his own was not linked to his heart condition, but rather to an airway disorder.
A month after heart surgery, Sam underwent another procedure at Lurie Children’s during which he was given a tracheostomy tube to help him breathe. For the first time, Cathy and Matt’s baby boy, restricted by fewer cords, could move his arms around. Though still attached to a ventilator, he began to thrive.
After the tracheostomy tube placement, Sam was able to go home at eight months old for the first time since he was born. Once at home with his family, Lurie Children’s Aerodigestive Program team continued to monitor Sam’s breathing issues.
Sam was ultimately diagnosed with a severe form subglottic stenosis and tracheobronchomalacia, meaning his airway was atypically narrow, and his windpipe, or trachea, was soft and weak. This meant his airway couldn’t stay open on its own for Sam to breathe normally.
While still on a ventilator, Sam began seeing Dana M. Thompson, MD, MS, MBA, FACS, Division Head, Otorhinolaryngology-Head & Neck Surgery at Lurie Children’s and an expert in pediatric airway disorders. The family and Dr. Thompson, along with her team including Carrie Keizer, RN, BSN, CPN, a Tracheostomy Resource and Aerodigestive Program Nurse; spent three years strengthening Sam’s airway and gastrointestinal systems. With the parents’ attentive care of Sam’s breathing equipment at home, in 2020 Sam was strong enough for an airway reconstruction, known as a laryngotracheoplasty.
Together, the parents and Dr. Thompson made the decision to pursue the procedures.
“She has always, always made Sam’s care a team effort,” Cathy said about Dr. Thompson. “We never felt she was telling us what to do. The three of us were always making decisions together.”
In the two-stage procedure, Dr. Thompson’s aim was to completely reconstruct Sam’s airway with the ultimate goal of no longer needing a tracheostomy tube. Using grafts, or cartilage, from Sam’s rib, Dr. Thompson widened Sam’s airway. She inserted what’s called a Montogomery T-tube, a nontraditional type of tracheostomy tube, to take the place of the tracheostomy tube and help the reconstruction site heal.
In May, the family hit a milestone they will never forget. Months after the final stage of his airway reconstruction, Dr. Thompson and her team removed Sam’s breathing tube.
“He didn’t flinch or gasp or anything. He started playing, it was amazing. It was absolutely amazing,” Cathy said.
Moments after, Sam, who uses American Sign Language to communicate, signed “thank you,” to his parents and the doctor.
Today, at 4, Sam continues to be monitored by Dr. Thompson and other specialists at Lurie Children’s. While he still has a gastrostomy tube to assist with his nutrition, he has started eating and enjoying solid foods. Cathy said her family jokes that Sam is very close to being “cordless.”
For the first time in his life, Sam has enjoyed his wading pool this summer, which is often off-limits for kids with tracheostomy tubes. He adores his big sisters Sophie, Ellie and Maddie, and is headed to preschool in the fall, which Cathy is certain he will love.
“He is quite the character, he loves being around people and making them laugh,” she said. “To see how far he has come and how strong he is, has changed our family for the better.”