Care for stroke lets Matty just be a kid

Most adults might encourage kids to behave themselves, but Matthew Marino’s doctor wants to help him make mischief.

“He told us that he loves when kids cause trouble and that he wants to help Matt cause trouble, too,” says his mother, Maura, of Dr. David Fogelman, a physiatrist in the Stroke and Cerebrovascular Center at Boston Children’s Hospital. “We worry that Matt’s medical struggles will cause him to lose his childhood, and it touches us to know that Dr. Fogelman truly cares about helping Matty just enjoy being a kid.”

A ray of sunshine on a cloudy day

Maura and her husband, Peter, knew when she was still pregnant that Matt would face some health challenges. He was born with severe congenital hydrocephalus, a condition in which cerebrospinal fluid builds up inside the brain. Over time, this pressure can interfere with normal brain growth and development.

We worry that Matt’s medical struggles will cause him to lose his childhood, and it touches us to know that Dr. Fogelman truly cares about helping Matty just enjoy being a kid.”

Although neurosurgeon Dr. Benjamin Warf was able to successfully place a shunt to regulate the flow of fluid, Matt experienced seizures and brain bleeds, a rare complication that the Marinos weren’t expecting. As their son recovered in the neonatal intensive care unit, the nervous Marinos met with Dr. Michael Rivkin, the center’s director.

“The first time Dr. Rivkin saw Matt, he was so sweet and gentle with him. I still remember how perfectly he swaddled him and how comforting he was to us,” Maura says. “Matt’s first follow-up appointment was on a rainy day and Dr. Rivkin walked in, smiled, and told Matt, ‘You’re a ray of sunshine on a cloudy day.’ He always seems genuinely happy to see us.”

Working hard

It was too early then to know if or how the damage done by the stroke would affect Matt. “We were heartbroken and worried about what the future might hold,” says Maura. By the time he was about 6 months old, his parents and clinicians noticed that he held his right hand in a clenched fist and his hips and legs were tight. Dr. Rivkin and his colleagues determined that the stroke had impaired his motor skills, especially on his right side.

Physiatry appointments with Dr. Fogelman and occupational therapy sessions with Julie Malloy have helped address those issues. For three weeks, Matt underwent constraint-induced therapy with Malloy, which involved placing his unaffected left arm in a cast. This approach encourages patients to overcome impairments by using their weakened limb more often. “We were amazed at the progress Matthew made in those three weeks,” says Maura. “Julie was full of so many tips and gave much-needed encouragement.”

We were amazed at the progress Matthew made in those three weeks. Julie was full of so many tips and gave much-needed encouragement.”

Indeed, Matt gained great skills with his right hand. For example, he had struggled to finger-feed himself with his right hand but by the end of therapy was able to do so much better. “We always heard of the benefits of constraint therapy but to see it work so well in our son was incredible,” Maura says. “It’s definitely a work in progress but now that he’s gained the skills, we feel like it’s only up from here.”

New adventure, same great care

Now 18 months old, Matt is living up to Dr. Rivkin’s description of him. A happy kid with a big smile and belly laugh, he’s learning new words and meeting his cognitive milestones. “People stop us on the street to tell us he brightens their day,” says Maura. And while the family is starting a new adventure, moving from Massachusetts to Texas, they won’t be relocating Matt’s care.

“I know it’s their job, but everyone we’ve met at Boston Children’s is just incredible and obviously loves kids,” explains Maura, who says the family will be traveling east regularly for Matt’s post-stroke care. “We have such a great connection with these clinicians and know he’s in the best hands — we can’t give that up.”

Meanwhile, this determined little boy — the youngest of six kids — is doing his best to fulfill Dr. Fogelman’s wishes to make mischief. But it isn’t easy. “He’s just so upbeat and cute that we can’t get mad at him,” laughs Maura. “He’s going to get away with everything.”

Learn about the Stroke and Cerebrovascular Center.