Lincoln and Ellie

Lincoln was born with Stridor – abnormal breathing caused by a disruption in his airway. He was intubated and moved to the Edwards Family NICU at the Alberta Children’s Hospital. ENT surgeon, Dr. Warren Yunker, determined Lincoln’s vocal chords were paralyzed. That’s when a tracheostomy was first mentioned. “It’s a word that sticks with you,” says Lincoln’s mom, Laine. Even though her cousin had a tracheostomy and she knew how it worked, she was scared about what it would mean for Lincoln and his future.

After a couple weeks, breathing was still a challenge. Laine remembers being able to hear her tiny son struggling for breath from all the way down the hallway in the NICU. When he was 16 days old, Dr. Yunker performed a tracheotomy – surgically inserting a hole into Lincoln’s windpipe that would allow him to breathe. Since he was so little, specialists had to keep him paralyzed for a week afterward so that he wouldn’t pull out his tube. It was heartbreaking for Laine to see her little baby, so still and quiet – he couldn’t even cry. After Lincoln was well enough, he moved to Unit 2, where the amazing staff helped prepare the family to take over care at home. Lincoln was also diagnosed with hypotonia, or low muscle tone. He went home for the first time at three months old.

To celebrate Lincoln’s first birthday, his family hosted a carnival fundraiser that raised about $15,000 for the hospital. And just six weeks after that, Laine found out she was pregnant. When baby Ellie was born, Laine heard that same awful word again – ‘Stridor’ – and her heart broke. Within hours of her birth, Ellie was transferred to the NICU at the Children’s. She had the same condition as her brother, and in many ways, hers was more severe. She would have full episodes where her oxygen would plummet and she would turn blue, recalls Laine. Though in Lincoln’s case, the family had resisted the trach, with Ellie, Laine could not wait for her to have the operation. Ellie received her trach when she was 13 days old and she was able to go home at two months.

Lincoln and Ellie have both been diagnosed with a genetic condition called congenital myasthenic syndrome, which leads to respiratory problems and muscle weakness, among other things. It has been a challenging road for the family – managing two kids with highly-specialized needs – but thanks to the support of many people, including staff at the Alberta Children’s Hospital, things are going well. “The level of professionalism and expertise at the hospital is exactly what you need in the beginning,” says Laine. “Then, later, when you just need a shoulder to cry on, that’s there too.” Lincoln is enjoying himself at pre-school these days and Ellie’s trach is capped, meaning she is breathing on her own for the time being.

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