How Robin sequence paved a dad’s road to the Boston Marathon: Chad and Izzy’s story

Go to any marathon starting line and you’re bound to find someone who was “never a runner” until something — or someone — motivated them to tie up their laces.

Chad Goyette is one such runner. But today, he’s fresh off the Atlanta Marathon and gearing up to run Boston. His inspiration? His daughter, Izzy.

Izzy, 2, was born with Robin sequence, a congenital condition in which a baby has an undeveloped lower jaw, a tongue positioned further back than usual in the mouth, and airway obstruction that causes breathing difficulties. Like many babies with Robin sequence, Izzy also had a cleft palate, which is a hole in the roof of the mouth. To correct her airway obstruction, and later to repair her cleft palate, Izzy was treated by the Boston Children’s Hospital Cleft and Craniofacial Center team.

A stressful wait for answers

Until his wife Katy’s 20-week ultrasound, Chad had felt lucky that Katy’s pregnancy had been healthy and uneventful. Until that point, the first-time parents’ biggest emotion was relief that Chad could finally be in the exam room following COVID-19 restrictions that had kept him waiting in the parking lot for previous visits. But during the ultrasound, Katy’s care team suspected that Izzy had an underdeveloped jaw. Katy and Chad were given the option of waiting until the next routine ultrasound or scheduling a fetal MRI to get more information. They opted for the MRI, which confirmed Robin sequence.

“It was such a stressful moment, and we were unsure of what was going on,” Chad says of the few days between waiting for the MRI and getting the results. But once they had an answer, the next steps seemed to fall into place.

“We felt like we were in good hands”

Katy and Chad worked with Katy’s obstetrics team to chart out a plan. That’s how they met Dr. Cory Resnick and Dr. Ingrid Ganske in the Cleft and Craniofacial Center. 

“Katy and I like to prepare,” Chad says. “So once we found out who we’d be meeting with, we looked them all up, and we found Dr. Resnick’s YouTube video about Robin sequence.”

Having background on their care team helped Katy and Chad feel secure in the care Izzy would receive.

“We felt we knew what we were going into,” Chad says. “We felt like we were in good hands and that everyone had Izzy’s best interest in mind.”

Within weeks of her arrival, Dr. Resnick performed mandibular distraction, an operation to push forward Izzy’s lower jaw and cure her airway obstruction. About nine months later, Dr. Ganske repaired Izzy’s cleft palate.

Running helped heal Chad as Izzy healed too

Chad admits he had fallen away from exercise for a long time before Izzy came along.

“I was never a runner,” Chad says. “I didn’t get it; I didn’t like it.”

But between COVID-19 lockdowns and the haze of Izzy’s early days and treatments, Chad needed an outlet.

“It just sort of happened,” he says of his progression from running one mile to three to eventually applying to run the Boston Marathon. “I ran to clear my head and focus on Izzy.”

Chad and Katy lived within a dozen or so miles of Boston Children’s when Izzy was born and underwent surgery. The luxury of sleeping in their own bed after a day with her in the NICU wasn’t lost on them.

“It was sometimes overwhelming — meeting families who drove for hours every day to be with their child,” says Chad. “I felt like, if I can run and train for a few years to help these other families, then I should.” So, he applied to run the Boston Marathon with the Miles for Miracles team to honor not only Izzy, but all the children and families he and Katy met during Izzy’s time in the hospital.

Marathon training was a lot of work, but Izzy has kept Chad motivated. She’s also kept him company — riding alongside him in her jogging stroller for most runs and cheering him on during the Atlanta Marathon last month.

Two journeys, one outlook

As he gears up for Boston, Chad can draw parallels between how he processed Izzy’s treatment journey and his training for the race. He says both require faith and trust in the process, even if that means a lot of unknowns.

Of running, Chad says: “You don’t have to go fast; you just have to just go.” And of navigating his daughter’s care — including surgery and recovery, and feeding, physical, and speech therapy — he says, “have trust in your team and remember that at the end of the day, you have this amazing little person.”

Learn more about Robin sequence or request an appointment with the Cleft and Craniofacial Center.