Overcoming Multiple Hurdles, Toddler Finally Free to Breathe on Her Own

July 21, 2020

Two-year-old Emersyn’s routine moments of toddlerhood – learning to form full sentences, playing on her swing set, imitating her big sister – delight her parents, Chris and Ashlee.

“It’s like nothing ever happened to her,” Ashlee said.

Less than a year earlier, Emersyn, or Emmy for short, was in an operating room for more than seven hours at Ann & Robert H. Lurie Children’s Hospital of Chicago undergoing major airway surgery with Taher Valika, MD, a head and neck surgeon and assistant professor of Otolaryngology at Northwestern University Feinberg School of Medicine. He is a member of the multidisciplinary Aerodigestive Program at Lurie Children’s, which performs the most airway reconstructions in the state of Illinois.

Dr. Valika reconstructed Emmy’s airway, so that for the first time in her life, she could breathe safely without assistance.

‘Completely Unexpected’ Issue at Birth

There were no shrieking cries when Emmy was born. Instead, Ashlee said her baby sounded like a “hissing cat.” Doctors at the Chicago hospital where she was born immediately evaluated her but didn’t notice anything wrong right away. Emmy could eat normally, and her major organs seemed to be functioning.

“We wondered what was happening, but were pretty optimistic because she seemed great otherwise,” Ashlee said.

A few days later, Emmy’s blood oxygen level dropped. She was moved to the newborn intensive care unit, and she saw an Ear, Nose & Throat specialist from Lurie Children’s, Dr. Valika. He met the family at the hospital where Ashlee gave birth to evaluate Emmy for the first time.

Finding a diagnosis and treatment plan

After examining Emmy’s throat, Dr. Valika diagnosed her with bilateral vocal cord paralysis, meaning her vocal cords could not move. This condition is rare but serious, causing symptoms like difficulty using one’s voice, and problems with breathing and swallowing. In most cases, doctors are unable to identify what causes this type of paralysis.

To help her breathe safely enough to go home, Dr. Valika recommended that Emmy get a tracheostomy, or a trach tube, inserted in her neck. He told the family there was hope the vocal cords could start moving on their own, and that could mean she would no longer need the tracheostomy. They were told seeing any improvements could take up to two years.

Prepared for the wait, Chris and Ashlee learned how to care for Emmy’s tracheostomy tube thanks to careful instruction from Lurie Children’s nurses. The parents were able to finally take her to their suburban Chicago home after about six weeks in the hospital.

Progress, but Other Hurdles

Around the time Emmy turned four months old, her vocal cords slowly began to function. But any relief felt from that progress was cut short when they found out their baby’s airway was narrowing, so breathing without a tracheostomy was still not an option. Dr. Valika told the family that Emmy would need airway reconstruction surgery, so the girl could breathe without a tracheostomy tube. The procedure is known as a laryngotracheal reconstruction, or LTR.

The parents scheduled Emmy’s surgery for the summer, but soon after that, they encountered another challenge. Emmy was diagnosed with eosinophilic esophagitis, or EoE, a chronic allergy disease that affected her esophagus. While undergoing treatment for that, which included steroids, surgery would have to wait.

“It felt like a huge blow, like we were back at square one,” said Ashlee.

Fortunately, surgery could be scheduled for just a couple months later.

After the procedure, Emmy’s parents faced some of the most difficult weeks of their lives. Emmy remained in a coma for several days as she healed, unable to move her neck. Finally, after three weeks of recovery in the hospital, the little girl got to go home – for good. No tracheostomy required.

‘Happy, normal 2-year-old’

In November, the family visited Sanibel Island, Florida, their first vacation together. Watching Emmy with her six-year-old sister Fiona enjoy the sand and water – play areas with restrictions for children with trach tubes -- was a particularly joyful moment.

Emmy turned two in May and is on pace to meeting all the milestones of a girl her age.

“When we tell people about Emmy’s journey, they are shocked because all they see is this happy, normal two-year-old,” Chris said. “I think that’s the greatest testament to the success of our treatment.”

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