AMHERST — Chris Barbaro said the birth of his son, Caiden, was “one big roller coaster” for the family.
At a time when most families would be introducing their newborn to his or her new home, Chris and his wife, Vicki, spent Caiden’s first six months in the neonatal intensive care unit at Cleveland Clinic.
Caiden, who was born early, is still in the hospital on a ventilator. When he comes home, he will be in the care of a full-time nurse until he can transition to breathing on his own.
Chris Barbaro, the band director at Marion L. Steele High School in Amherst, recounted Caiden’s scary debut on Dec. 3.
“Right away, we knew there was something wrong because he wasn’t breathing on his own,” Barbaro said. “We started noticing characteristics on his body that are a little different. We thought he had Down syndrome, but we later learned he has dwarfism.”
Caiden was diagnosed with achondroplasia, the most common type of dwarfism. He also has chronic lung disease, which necessitated a tracheotomy and use of a ventilator, and pulmonary hypertension, which is common in pre-term babies.
But despite the day-to-day challenges Chris and his wife face in raising Caiden, Chris Barbaro called the birth of his son a blessing.
“A lot of people say, ‘How do you do it; how do you manage?’” he said. “I say, ‘I don’t know. We just do it.’ It’s our kid, so you know you have to.”
Barbaro, who has been making daily trips to Cleveland after work to see Caiden, said he has been speaking with parents of “little people,” including a couple whose child also has achondroplasia. He said he will expose Caiden to families with similar children so that he doesn’t feel alienated and although Caiden is different, Barbaro said his only concern is for his health.
“When I see Caiden, all I see is our son. We don’t see anything else … I think our biggest worry is more so, is he going to be better?” he said.
Barbaro said, however, that Caiden has been making great strides.
“Ever since the tracheotomy, we see a baby,” he said. “When we come in, he’ll smile at us and laugh.”
Now, the family is busily preparing for Caiden’s trip home, which requires re-wiring the house to support a ventilator. That, the full-time nurse and $20-a-night bill for the family’s stay at the Ronald McDonald House has been pricey for the Barbaro family.
To help defray medical costs, Amherst High School band parents and other community members are holding a fundraiser noon to 4 p.m. Sunday. Donations also can be made at any FirstMerit Bank to the Caiden Barbaro Benevolent Fund, said one of the fundraiser’s organizers, Kathy Szabo.
Szabo, whose son graduated last year and played trumpet in the band, said Barbaro has given so much to the band and to the community, that she and other “band moms” thought it was time to give back.
“He gave so much to the community and now he’s in need,” she said.
Szabo said the Superheroes for Kids in Ohio will stop by Sunday, and the Moscow Nights Trio will perform music and dance. She encouraged residents to attend, saying that there would be something for everyone.
Barbaro, who learned the band parents were planning the fundraiser, said he was astonished by support from the community.
“I am just overwhelmed with emotions, especially my wife,” he said. “I am overwhelmed with what everyone’s doing.”
Amherst residents are raising money to support medical treatment for Caiden Barbaro, born prematurely with achondroplasia, a common form of dwarfism, and chronic lung disease.
Caiden, the son of Amherst Steele High School’s band director, needs 24-hour nursing care at home until he is well enough to be removed from the ventilator.
A fundraiser will be noon to 4 p.m. Sunday at Amherst Eagles, 1161 Milan Ave. The fundraiser will include a barbeque chicken and ribs dinner, bake sale, car wash and fire truck.
Donations also can be made at any FirstMerit Bank to the Caiden Barbaro Benevolent Fund.
Contact Chelsea Miller at 329-7123 or firstname.lastname@example.org.