Tommy’s journey

Tommy Boyce is a typical toddler-curious, active and loving. He is learning about the world around him, socializes in a play group and with his big brother Brandon, 9, and is on track developmentally.

Although Tommy’s life is no different from any other 2-year-old, his daily routine couldn’t be more different.

Tommy was born with a rare birth defect, a congenital high airway obstruction and fused vocal chords, which inhibit his ability to breathe on his own. His lifeline is a ventilator.

Maggie Boyce of Oak Forest was 22 weeks pregnant with Tommy when an ultrasound detected a serious problem. Even though it took time for the correct diagnosis to be made, doctors were sure Tommy could not survive birth.

After hours of research and a trip to Cincinnati, Maggie and her husband Tom found a team of doctors who believed Tommy had a chance. However, his life depended on a cesarean delivery and a tracheotomy before cutting the umbilical cord.

The Boyce family, who traveled to Ohio for Tommy’s birth, has continued to work with a team of doctors at Cincinnati Children’s Hospital where Tommy is cared for medically. These days he regularly sees an ear, nose and throat doctor, a pulmonologist and a urologist.

“It’s not easy going out of state for medical care, but those are the doctors that give me the proof I need for his care. They are the ones who have the journal articles, the medical research,” Maggie Boyce says.

Tommy has other medical issues, which require him to see a urologist and an orthopedic surgeon and to have had surgeries that have nothing to do with his lung function. The couple consulted with a geneticist, too, to rule out the possibility of a genetic disorder as the cause of Tommy’s complex medical case.

Currently, the Boyces are working to transfer Tommy’s medical home to a special needs pediatrician in Ohio. This pediatrician would supervise all of Tommy’s medical issues and treatment plans, Maggie explains. Under this plan, Tommy would see a Chicago-based pediatrician to manage medical treatment for typical childhood illnesses, such as colds and the flu.

Maggie and Tom Boyce have no idea what the future holds for their young son. But they are hopeful that one day his lungs will be strong enough for him to be taken off the ventilator.

“We try to go out as much as possible and we live life to the fullest,” Maggie says. “We are optimistic about Tommy’s future, but we also are realistic.”

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