Community rallies around Quinlan family

Mazie Quinlan.

LEE — On the day that Mike and Charlene Quinlan were having their soon-to-be-theirs home inspected in Pittsfield, the newly married couple also learned that one of the two babies they were expecting had a heart defect. And since that day in March, the Quinlans’ life has been an emotional rollercoaster with constant waves of uncertainty.
“Insanity has become pretty normal,” said Mike.
But in learning of the hardships of the Lee native and his young family, his hometown has come together to coordinate a concert to try to ease some of the financial burdens on Saturday, Jan. 4.
The couple welcomed their twins, Marshall and Mazie Quinlan, at 36 weeks, on July 15 at Brigham and Women’s Hospital in Boston. Mazie, who came first, was born with Pulmonary Atresia with Intact Ventricular Septum (PA/IVS), hypoplastic right heart and hyperinsulinism.
PA/IVS is a rare congenital cardiac defect that researchers estimate about 550 babies in the U.S. are born with each year, according to a 2019 study using data from between 2010 and 2014 from birth defects surveillance systems across the U.S. collected by the Centers for Disease Control and Prevention. Roughly, this translates to about one in every 7,100 babies born each year that are born in the U.S. with pulmonary atresia. The defect causes an absent connection between the right ventricular outflow tract and pulmonary arteries as well as an intact ventricular septum that allows no connection between the right and left ventricles, said Charlene.
Hypoplastic right heart is a congenital heart defect that entails an underdeveloped right atrium and right ventricle, and causes an inadequate flood of blood to the lungs, said Charlene. Hyperinsulinism refers to an above-normal level of insulin in the blood. This condition occurs in about one in 25,000 to one in 50,000 births, said Charlene, who noted that over the past few months of diagnoses, the couple has learned a lot about rare diseases.
“At one point, we were told she might not make it,” she said. “It’s been an emotional rollercoaster for sure.”
Initially, doctors believed Marshall had a tethered cord, but learned that he had Occult Spinal Dysraphism, which is a set of malformations involving neurulation of the spinal cord.
While doctors have stated that Marshall’s diagnosis is something that may never cause him any problems — and will continue to monitor him, just in case — Mazie, on the other hand, hasn’t been that lucky. Right after she was born, she was transported to the Pediatric Cardiac Intensive Care Unit at Boston Children’s Hospital. On July 24, she had her first patent ductus arteriosus (PDA) stent implanted and has had it replaced twice since then.
At the end of September, Mazie had a special kind of X-ray imaging to check for biliary atresia. In November, she was moved to Children’s Hospital of Philadelphia to stabilize her blood sugar and perform a surgery on her pancreas. The Quinlans have traveled back and forth to Pennsylvania twice to stay with their daughter, but with the responsibilities of work and accumulating bills back, the couple had to return home to Pittsfield.
“My job has been super supportive through all of this,” said Mike, who teaches science at Hillcrest Educational Centers at their Great Barrington and Lenox locations. “But it’s like living two lives. You have this sense of normalcy with one child at home and then know that you have another that hasn’t come home yet … it’s incredibly hard.”
Charlene echoed her husband’s sentiments about their current circumstances.
“Marshall and I have a routine. They’re both 5 months old now. He knows who I am. But I don’t get to see [Mazie] every day. I call the hospital to check in, but I’m not sure she knows who I am,” she said. “She might just think I’m someone else that comes and sees her.”
On Monday, the couple got some good news: Mazie would be transported back to the Pediatric Cardiac Intensive Care Unit at Boston Children’s Hospital, which will make it easier to spend Christmas with both of their children.
Currently, Charlene has been staying home with Marshall, but as bills add up and knowing that Mazie is coming home soon, and require additional treatments, she has begun looking to return to work in manufacturing.
Early on, a family member created a GoFundMe for the Quinlans and has raised more than $12,000 over four months for the family. As Mazie’s stays have extended longer than expected, the bills keep adding up. Driving back and forth to Boston alone, the couple surpassed more than $500 in tolls on the Massachusetts Turnpike.
The Quinlans’ story has struck a chord with Mike’s hometown. And as such, several people have come together to help raise money through a concert, including Mike’s former band teacher at Lee High School, Joanne Nelson-Unczur and bandmate Alison Mechek.
“Shortly after the kids were born, people started reaching out and asking if they could do anything to help. It’s amazing because people would just send us over gift cards,” said Mike, adding that all of the community support has been “amazing.”
The “Music for Mazie and Marshall” concert will take place at the Lee Middle and High School auditorium on Saturday, Jan. 4 at 6:30 p.m. and features the stylings of 16-piece jazz band Berkshire Big Band. The event includes a 50/50 raffle and a concession stand.
“They are struggling and need our help as a community,” said Christina McHugh, a Lee resident that’s assisting in the organization of the event.
Mike’s band, “Twisted Evolution,” which is self-described as providing hard rock, blues and progressive jams, will also be among those performing.
Tickets are $15 and can be purchased by calling or emailing McHugh at 413-243-4959 or cmc81888@aol.com or MeChek at 413-822-0645 or allisonmechek@gmail.com.

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