Milford rallies around toddler born with airway disorder
Kelly Scrivines and her daughter, Emily, 16, sat in a hospital room in the intensive care unit at Yale New Haven Hospital recently, watching for signs that three-year-old Mason knew they were there. They flew to his side when he opened his big blue eyes slightly: they looked at him and spoke encouraging words.
Mason was born with tracheobronchomalacia, a floppy airway which required a tracheotomy, a procedure to create an artificial airway in his neck. He spent most of his first two years of life on a ventilator, until he had a 13-hour airway reconstruction surgery last March at Boston Children's Hospital and weaned off the ventilator.
The change was amazing, his family said. When he came off the ventilator he was so happy and so much like any other toddler. He still had a tracheal intubation to maintain an open airway while he awaited a final surgery, but he was free of the restraints of the ventilator.
Emily, Mason’s sister, has video on her phone of Mason playfully taking her hat from her, and another of him coloring.
Kelly, Mason’s mother, can still picture her little boy at Eisenhower Park in early May last year, when they took him to the playground there for the first time. Without the cumbersome ventilator he was able to play like any other toddler.
“He was able to run and climb, and wanted to follow the other kids,” Kelly said. “He wanted to sit on the swing. That was when we realized how huge this was.”
She can also picture Mason at the Franklin Park Zoo in Boston, where the family took him after a procedure. “He ran around with the baby goats and he petted them,” she said. “He was able to just run, and we didn’t have to push all that equipment and worry about all the things connected with that. He had those moments. He was free.”
His doctor, Howard Sadinsky, of the Milford Pediatric Group, said Mason was somewhat delayed in his development due to his medical condition, but while he wasn’t talking yet he was communicating and progressing.
His mother said he was signing, and she speculates he wasn’t talking because of the trachea. He’d been learning how to say “mommy” and “daddy” through sign language.
On Dec. 17, as the family was setting its sights on Mason’s upcoming follow-up surgery that was to complete his airway reconstruction, he suffered a setback when his tracheostomy tube dislodged, and he went into cardiac arrest. His parents attempted the interventions they had learned over the years, but scar tissue in Mason’s airway hindered their attempts to force oxygen into him.
“His brain endured severe, tragic injury to the basal ganglia and the hypothalamus,” according to his mother’s Gofundme page, which she set up earlier in the face of mounting medical costs. “He has lost all his abilities, aside from breathing and expressing pain. His Boston surgeon has decided he would like to give Mason’s brain and body a three- to six-month break before beginning the long major reconstruction of his upper airway.”
It has been hard seeing her little guy make such strides, just to suffer this setback.
“Our whole world has turned upside down,” Kelly says on her Gofundme page. “Our hearts are broken. We miss his smile, him running around and climbing on everything.”
Mason’s father, Charlie, is maintenance supervisor at Caswell Cove condominiums in Milford. Dotti Bateman, president of the Caswell Cove Association, said Charlie is well liked and a hard worker, and that her heart goes out to the family.
“Kelly is at the hospital all day and Charlie all night,” Bateman said.
Mason has four sisters: Mckinley, 17, Emily, 16, Carly, 14 and Samantha, 12.
Emily said it has been hard watching her little brother struggle, but she is beyond hopeful.
“It’s really hard to see him not doing what he was doing,” Emily said. “But I’m hopeful. I’m going to help him get there.”
Dr. Sadinsky said time will tell how much progress Mason makes.
Today the family is looking for a pediatric rehabilitation facility for Mason, and they are torn apart at the idea of being more than a short drive from their little boy.
The community has been rallying around the family. So far people have donated almost $3,000 to the family through Gofundme (gofundme.com/team-mason-angels). Community members have also supplied dinners through Mealtrain. Pop’s Family Restaurant in Milford held a fundraiser, and East Shore Middle School held a pajama day to raise funds for the family.
For now Mason is still in the ICU at Yale. Kelly said he has to meet certain criteria before being transferred to a rehabilitation facility, possibly in Boston or New York. The family is researching facilities.
Mason is a fighter, his family says, a miracle, and they maintain hope.
Emily focuses on her brother’s recovery with zeal. She tells her mother that as Mason gets better, they will be able to relive some of their favorite moments with him. “We’ll be able to teach him how to climb on the couch again,” Emily said.